New Pics

I am getting really bad at updating this lately...as I was reminded by my entire family at my little brother's birthday party on Sunday!! Things continue to progress appropriately, I guess. Max is doing really well and has adjusted to life at home. He has had some good doctors appointments recently and they have resulted in a few adjustments to Max's vent settings, but not any of the pressures just yet. Things move a little more slowly after leaving the NICU, and we were aware of that before we left, but the reality is kind of a bummer when he is doing so well. Max is tipping the scales at 19 pounds as of today...and his cheeks are still as chubby as ever. His latest trick is peeing whenever he is put in the tub. The last two tubbies have resulted in at least 3 tub refills each. And the look on his face while he is peeing all over the place is of a deep sense of pride.

Wes is still chugging along. We continue to struggle with retching and weight gain, and truthfully, that has been an incredibly frustrating ordeal. No one seems to really have any idea what is causing it or what to try next. We are on our third type of formula in as many weeks and just really want this to stop and start seeing some good weight gain. He weighs 16 pounds as of today, but next to his brother if looks like he weighs about 10 pounds. Wes is off oxygen all day, and we have a sleep study in April to see if he can come off oxygen altogether!! It is hard to believe we will ever have a baby that is not connected to some sort of wiring or tubing.

Certainly one of the highlights of the last couple of weeks was a follow up photo shoot with Marie Clark. She came and did a session with us when the boys were about 4 months old...needless to say, they have changed a bit since then! Below are some examples of Marie's amazing talent. You can view all of the pictures at the following link:

http://www.pictage.com/690798

Wow

Sorry for the long gap between posts...life is a little crazy right now! the boys are both doing well for the most part. Max has adjusted well to home life and is getting on a good schedule that somewhat agrees with Wes' schedule. We had our first pulmonary appointment with Max last week, and we were not real excited about it because we had a bit of an altercation with the doctor in the NICU before Max went home (she had a lot to do with him not coming home before Christmas). I am happy to report, the doctor was very professional and was impressed with how Max is doing. She really thought he would be working hard and struggling with the adjustment to home still, but said that he looks and sounds like he has been home for 6-months. That was good to hear! She even said that if he is still doing as well as he is now, that at the next appointment we can talk about making some ventilator changes!! Max has not really gained a lot of weight since he came home and is still about 18 1/2 pounds. Wes is plugging along and seems to have adjusted to getting a little less attention than he is accustomed to. He is still retching regularly and has started spitting up regularly as well. This has been a very difficult issue for us as we cannot seem to get any clear direction from any of our 6,000 doctors. The latest news is that we are being referred to a neurologist. I am not exactly sure what the thought process behind that is, but what's another doctor appointment? I had a pulmonary appointment with Wes on Monday that went well. We are now down to just 3 breathing treatments a day (from 4), which means I no longer have to get up a 5:00 AM...I get to sleep until 5:20 AM now...which is very exciting!!

Still here!

Well folks, week #1 is in the bag!! Max has officially been home for 7-days and has far surpassed his little brother's first trip home that lasted only 49-hours. Max is just a doll. This whole move doesn't seem to have bothered him one bit. He just likes to look at new things. I think his nurses in the NICU spoiled him a little too much, because he does start to cry when he is not being entertained or held. And his cry is so adorable (and we just love to hear him make noise!!) that sometimes we listen to it for a little while before coming to his rescue. Overall the week has been good...a LOT of adjustments to make, and Kate has made most of them. I was not able to get as much time off of work...or hardly anytime off of work to be more specific...as I had hoped, so she, with the help of our in-home nurses and other family members have shouldered a lot of the transition.

It is an absolute riot to see both boys laying on the floor trying to figure each other out. They swat at each other sometimes, just stare sometimes, watch TV together sometimes...they are hilarious.

Wes tried to share his favorite rings with Max:

Then he realized he likes them all to himself:

Here is Max having a great time, Wes is still not sure about everything...

He's here!!

Wow. A new leg of the journey begins. Max came home from the NICU yesterday late afternoon, concluding a 9+ month stay in the hospital. So far, I think he is making the transition better than his parents. Both Max and Wes seem pretty unaffected by what has been a tremendous change in our lives. The most emotional distress Max showed through all the events of yesterday was that I think the cold air made his eyes water a little bit. He did fine in the car on the way home and didn't miss a beat when he woke up in our house. There were about 7-8 different people from CareLinc (the medical equipment provider) and our nursing agency in and out of here for a few hours, and nurse Jennifer stayed from about 8:00 PM last night to 10:00 AM this morning. This is going to be crazy, but having him home is unbelievable. We got to sing and pray with both boys tonight, and I was able to kiss both of my sons "good night" and not "good-bye." Truly something I have been waiting for for such a long, long time. Thank-you to everyone for their prayers yesterday and for the last 9-months. It has been a long, hard, trial filled journey, but it is taking a turn for the better I think. We covet your continued prayers as we adjust to caring for Max at home.

Could it be?

This is just going to be a short post...sorry for the lack of communication. I can hardly believe that I am writing this, but there is about an 80% chance that Maxwell is coming home tomorrow (Monday)!! After 9-months and 7-days, 283 total days and 15,000+ miles just commuting to the hospital and back, I cannot believe that he might actually come home. After a certain period of time I think I just thought this is how life would be for us: one of us parenting Wes while the other parented Max at the hospital. There is certainly equal levels of excitement and fear about Max coming home. Life will not be the same for us for a long, long time. We will have a nurse living in the house every night, help for Kate during the day while I am at work and a tremendous amount of responsibility with Max's trach. Please pray that tomorrow will be the day, that Max will make the transition well and that Kate and I will make the transition well. It seems like too much to handle right now and we are praying for an outpouring of the Holy Spirit to carry us through.

Here are some pictures from Christmas day...we cheated and put the boys by each other. Needless to say, it was amazing!!

Warning!!: These are the cutest kids you will ever see.

And we're back

Hi everyone! It has been a LONG time since the last post, and I apologize for that. This whole "living in two places" thing is getting really old. Every time I wanted to sit down and write a post, something came up, or it was too late in the day, or there was an issue with the computer...but I am back.

The last couple of weeks have been challenging. To answer the question most people will likely have: Max will not be coming home before Christmas. He was doing really, really well right up to the vent discharge meeting, and a number of changes were made to his medications, dosages and frequency right around that same time period. This combination of changes did not sit well with Max and his oxygen needs increased to the 45-50% range for a long enough period of time that it "reset the clock" so to speak on him going home. I am happy to report that after a little recovery period, Max is doing well and seems to be back to himself. His oxygen requirements are back in the high 20% to low 30% range, and he is on a manageable breathing treatment schedule (4 times a day instead of 6). Even though Max is no longer scheduled to come home next week, we had this past Thursday night planned for what they call "rooming in." This is when Kate and I (and Wes) spend a 12-hour period (overnight) with Max in a room adjacent to the NICU, and we are responsible for all of his care. This was kind of scary and really exciting at the same time. We got there around 5:30 and got settled in (the room was about 10x14 if I had to guess). The room has a couch that folds down into half a bed, so we took along the Aero Bed (thanks AGAIN Tony and Cara), and we also had the Pack-n-Play for Wes, and they had to fit Max's crib and all of his hardware in there too. Needless to say, it was pretty tight. By in large, the night went well. We did have one event at about 11:00 where we had to change out his trach because he was desatting a bit. This is not an easy procedure, but it needs to become second nature for us, so the practice was good. The problem is that it was just practice and wasn't necessary. The reason he started to desat (meaning his oxygen saturation fell outside of the desired range) was because of a nebulizer that we had plugged into the "ventilation circuit" for a breathing treatment that was not properly assembled. It took us a little bit of time to deduce down to the nebulizer being the problem, but it was a very good exercise to go through in the hospital vs. our first night home. "That is why we have people room in" was a common phrase the next day. Nurse Ashley was actually in the room when all of this happened, but she did her job and stayed out of the way and offered what I will call "limited" hints. I ended up getting some good sleep, but I had been up since 4:30 in the morning and had worked 11-hours before driving straight to the hospital...so sleep came a little easier for me than Kate, not that she didn't have a stressful day getting everything together that we would need to have Wes out of the house overnight. Max sets off a few more alarms than his brother does, and they are certainly more shrill. Turns out I can sleep through those too, which should come as no surprise to anyone who has ever had the pleasure of sharing a house with me, but they kept Kate awake. In time I am sure she will get comfortable with them and the fact that we will have a nurse in the house when we are sleeping should help a little bit.

So the new date for Max coming home has been penciled in as January 4 or 5. We are so excited. It would have been great if he could have come home before Christmas, but at the end of the day we want him home when he is ready to be home. Please join us in praying that Max can stay infection free for the next few weeks (and years!) and that we won't have any unexpected bumps along the way.

Wes has been a good boy with all of the crazy stuff going on. We had a lot of training on the equipment Max is coming home on and he slept through the whole thing. Then he slept for about 13-hours straight at the hospital on Thursday night, despite all the new alarms and surroundings. We did finally get his surgeon to agree to an upper GI, and that all looked good, so hopefully no additional surgery. Naturally, the day after the procedure Wes spit up formula for the first time since he had his surgery. So something is either wrong and not showing up, or the retching is some sort of learned thing. We don't know, we just know we want it to go away.

We covet your continued prayers for the boys and for us. The last few weeks have made us realize what exactly it will take to care for Max at home, and it seems pretty daunting right now. Pray that our nerves will be calmed and we can make all of the arrangements necessary before he joins us here at home.

Here are some more recent pics:

A lot to be Thankful for

It's Mark again, Kate let me take a little break from the blog. Hard to believe Thanksgiving has come and gone already! I will add a disclaimer right out of the gate that I am writing this blog and taking care of Wes simultaneously. For example: I have been trying to write those last 3 sentences for about 35 minutes now...needless to say, this post may be a little disjointed.

I am really super happy to report that Max is feeling better!! He was still battling a fever up until about Saturday morning, but has been doing much better over the last 48-hours. The docs are still very confused by the whole episode. They checked and rechecked every possible thing and everything came back negative...which is great but a little frustrating. The upside (always looking for the positive) is that the fever didn't seem to effect any other part of his body: his respiratory status is unchanged or improved, he continues to do his "business" with ease (maybe "gusto" is the better word), and he continues to gain or maintain his weight (he is on a diet...again). We are ecstatic that the fever seems to have subsided for now, and we certainly feel like we have our baby boy back again (I got no less than 50 smiles out of him yesterday...just not for the camera!!). His oxygen needs have been in the 30% range...a tremendous improvement over, oh the last 8-months or so!! He really seems to have turned the corner on the oxygen side of things and has been below 40% for a good 10 days or so now. Max gets a sizable dose of Viagra (or Sildenafil...for those of you who blush easily) to help treat his pulmonary hypertension (Viagra was originally designed as a blood pressure medication that doesn't work well in adults, but has other "marketable" benefits) and one of the side effects of this dose is that it makes him all hot and bothered. I am not trying to be funny here...he really starts sweating like crazy (he gets the cutest beads of sweat on his upper lip). So the docs wanted to see if they could start to wean the size of this dose to see if that would help alleviate his temperature. Before they could do that, it was time for yet another heart echo. I have lost count but I am going to guess this is heart echo number 15 or so (one of the things I am thankful for is Priority Health!!). In typical Max fashion, the echo showed no real signs of pulmonary hypertension!! What?? I kind of feel like God pulled the old bait and switch on us. Like He gave Max a mysterious fever so we would be distracted while He healed other areas of Max's body. I am not going to question your methods God...just be thankful for them. The high PH was always something that deeply concerned me...much more than I ever let on to anyone. So to say that the heart echo results were very good is an understatement for sure. I feel like a different person since I heard that news, almost like I can just enjoy being with my son instead of worrying about his fragile little heart.

True to my earlier disclaimer, it is now Thursday night and I am just getting back to finishing this post. It has been a busy couple of days. We had Max's vent discharge meeting on Wednesday. This was kind of a big pow wow with everyone that will be involved with Max post NICU, which is to say a LOT of people. There was a number of people from the respiratory practice that will be treating Max after discharge, people from the Early On development clinic, social workers, representatives from the home nursing company, representatives from Carelinc (the company who provides all of our 10 million medical supplies), Dr. Doctor was there, Jason the Physical Therapist who has been working with Max for a number of months, and Nurse Emily and Nurse Ashley (thanks for being there ladies!!). It was kind of overwhelming, but at the same time exciting to talk about Max actually coming home!! We did not get a firm date, but we are tentatively looking at December 21 or 22. I cannot even believe I am writing that. It creates such a crazy mix of emotions: unbelievable excitement about having my family under the same roof, our roof, for the first time in more than 8-months, but at the same time there are a lot of unknowns about how much we do and don't know. I like to think we are ready, but with so many pieces of equipment and so many procedures to know, it is hard not to second guess ourselves.

Here is a picture of the efforts taken to break Max's fever: he is naked except a diaper with cold cloths all over him...not fun.

Please pray with us that Max will continue to do well in the NICU for the next couple of days/weeks. We are still needing him to stay below 40% oxygen, and he was at 39% for the better part of the day. He had a really good blood gas yesterday (7.45 and 47), so they made a vent change, they also increased his sat limits (from 90-100 to 92-100) and took away some of his pulmonary medications. Needless to say, that is a lot of things to change in a few short hours. We are praying that he adjusts to the changes quickly and can get back to the low 30% range again soon.

I have to mention this moment at the vent discharge meeting: We were discussing the amount of Albuterol that Max has been getting, and someone told Dr. S (the pulmonary doc, also, I am not protecting the innocent, just have no idea what his last name actually is...but it sounds like "shoe in") that Max was on 0.5 mg, nebulized. He looked very confused so I repeated that it was 0.5 mg. His response, verbatim, was, "that does no compute." It was 5 mg nebulized. Sorry, I only have a lowly finance degree okay. He might not know how to calculate a Compound Annual Growth Rate right off the top of his head...so there.

Wes is still doing well at home. we continue to have issues with retching and are both feeling like we may need to take some more drastic measures that we hope does not lead to him having to have the Nissin surgery repeated. The first step would be to install an extension that would bypass his stomach completely to give it a chance to fully heal (they think he may have pulled a stitch or something along those lines). If that did not work, then we are back in the OR. The chiropractor seems to be helping with reflux, but the retching seems to be somewhat unrelated in a way. Not what we were hoping for. He is still an absolute joy to have around and has really been a great baby. He was sitting with Nurse Ashley at the vent discharge meeting the other day and was scanning every face in the room. Every time he looked at Kate or I he would smile, then start looking around the room again. What more can a parent ask for?