Wiersma Family Blog

WIERSMA FAMILY BLOG
A glimpse into our lives as a family with micro-preemies. Our twins boys (Lovingly referred to as our Miracle Men) were born almost 16 weeks early.

Our journey continues when our son Max was diagnosed with cancer at the age of 3. This is his story....


Sunday, August 30, 2009

Crazy times...again

This has been a crazy week. Between Max's surgeries and Wesley getting ready to come home, it is an understatement to say we are overwhelmed.
We are elated to announce that we will be taking Wesley home on Tuesday evening!!!! Mark and I are so excited to get that little guy home. However the excitement is bittersweet. It is going to be extremely hard to leave Max at the Hospital for a minimum of two more months. We are struggling with the fact that we won't be able to visit him as much as we want and whenever we want.
Please pray for Max he still has a lot to overcome before he gets to come home. He is such an amazing little boy. He has gone through more in his five months of life than most of us go through our entire lives. His trach has allowed his personality to finally shine. He is most definitely more laid back than his brother. He has the most precious facial expressions. His beautiful dark brown eyes just sparkle when he gets excited.
His oxygen needs have gone up over the last couple of days even with the INO, currently he is in the 50% range. Also, the ventilator settings increased as well (currently 32 over 10), but we recognize this is partly to treat the hypertension in his heart. Tomorrow(Monday) he has a heart echo to see if his pulmonary hypertension is getting worse. We are very nervous for the results. It will give us a better idea how long and just how sick Max's heart really is. We are praying that we got the trach in time and haven't caused more damage to his little heart.

Wednesday, August 26, 2009

Blown Away

Today has been a good day. Max seems to be feeling much better, and the nurses and docs seem to have found his happy place from a pain control perspective. Kate said he was awake for a couple of hours, just calm and looking around. He was even trying to play with his toys with his arm that is taped to a foam board because of his IV...it kind of looked like he was flapping his wings instead though. But, with the amount of pain meds and other sedation drugs he has had in the last 36-hours, it is very impressive that he can focus on anything!! From a medical perspective, his incisions and new man-made orifices seem to be healing well. His blood gases have looked pretty good as well, his CO2 has been running in the mid 50s. His oxygen needs have been right at 40%, so the INO has certainly helped with that. The docs have decided to start weaning down the INO already. The dosage is measured in parts per million (ppm), and Max started out yesterday at 20 ppm. The plan is to turn the dose down by 5 ppm every 8-hours assuming he tolerates the changes well. They made the first move from 20 ppm to 15 ppm at 3:00 this afternoon and the change did not even register as a blip on the screen!! We are praying for continued changes in the right direction over the next 24-hours. Max also started to get fed through his new G-tube this afternoon and seems to be doing well. They started him at half of his normal feed and they will slowly increase his feedings and decrease the IV fluids until he gets back to full feeds and then the IV can come out...Max would REALLY appreciate that!!

Kate and I had our first of many meetings and training sessions before Wes comes home, hopefully next week Monday or Tuesday. Tonight was learning Wes' home monitor. Since he is coming home on oxygen, his O2 saturation needs to be monitored 24-hours a day. This is done by a little apparatus called a pulse sock that is worn on the foot. As long as Wes' saturation is higher than 85%, Kate and I sleep well. If it drops lower than that...the alarm goes off. I can only describe the alarm as a mean alarm. It is meant to do just one thing...alarm you. Wes' has been very stable over the last number of weeks, so we are hoping for a few alarm free days here and there. We also had to learn about the oxygen tanks and regulators, as well as the nebulizer machine for his breathing treatments that he gets 4 times a day. Wes is not going to be getting out of the house much for a while, but we do have a number of doctors appointments and therapy sessions in the near future. So Wes will come with a car seat, all of the diaper changing stuff, a spare feeding tube in case he pulls his out, his O2 monitor, an O2 tank, and the nebulizer machine depending on when the appointment is. And that does not hold a candle to the hardware Max will be toting. In fact, most kids with trachs get custom built strollers called "kid carts" that is specifically designed and built for Max and includes a spot for everything necessary to get him from one place to the next.

I titled this post "Blown Away" because that has been my overwhelming feeling today. Yesterday was one of the longest days I have had in a while, maybe since Kate was in labor more than 5-months ago. Today was a lot different than that. I was hoping to get into work early this morning so I could catch up on some things. The storm last night knocked out our power for a few hours, so instead of the alarm going off at 6:00, I woke up at 7:48. Whoops!! But the extra sleep was nice. I was talking to one of my buddies this morning on the phone about Max's surgery and Wes coming home. He mentioned that it would be a good idea for Kate and I to get a date night in before that happens. I told him that it is Kate's birthday tomorrow (Thursday) and we had plans to go to San Chez in Grand Rapids after we spend some time with the boys. About 2-hours later a co-worker of mine drops off an envelope on my desk containing a gift card to San Chez. A few minutes later I got an email from a high-school classmate saying that we should expect to see a check in the mail. We recently had out 10-year high school reunion (man...we are getting old!!), and Kate and I could not attend given the situation with Max and Wes. Apparently, a number that did attend made donations for Kate and I. Later in the afternoon, another one of my friends called and said he made a few phone calls and we should expect to see a handful of gas cards show up in the mail some time soon. Kate and I do not know how to react to all of this. To say thank-you is just not enough. God has asked a lot of us, but He has provided much in return. We have learned so much about what it means to be a Christian and what is means to empathize with others. Kate and I have commented to each other on a number of occasions that we cannot wait until we have the opportunity to pay some of this "forward."

Along those same lines, I need to mention a few other things. I struggle with how best to present this information, because Kate and I truly believe that God has and will provide for our needs. Some dear friends of ours have organized a 5K race/fundraiser for Max and Wes. They asked me to mention it on the blog because they felt like a lot of people want to know how they can help. I struggled with how to bring it up and how to make mention of it, and then a lot of stuff was happening with the boys and I was not able to get the info on here sooner. At any rate, they have a website where you can find all the details, and the link is below:
They organized a race for a gentlemen last year who had essentially an unknown ailment in which he incurred significant medical expenses. Please know that we have very good health insurance through my employer and that medical expenses have not been a hardship for us. Our friends Rob and Tiece Dykema, (you will see their names on the website), said they wanted to do the race again and have if be for the benefit of Max and Wes. This led to a lot of contemplation on my part. I never in a million years thought I would be in a place where I had to be a steward of not only my own money, but also of gifts given to us because of a difficult situation we are going through. Sounds like a good problem, but it is one that has weighed heavily on my heart. I looked into setting up an organization where donations could be tax deductible, but it turns out that the federal government doesn't hand those out very easily. So this is what we did (I say "we" because I had a lot of help and a lot of advice): We have set up an account at a bank (not Macatawa Bank, because I work there) called the Wiersma Family Fund. Neither Kate nor myself has access to this account. The fund is managed by three people of our choosing that all had to meet one criteria: they have to have the best interest of Max and Wes at the forefront of any and all decisions. I will keep two of their names confidential, but I will say that one of them is my Dad. My Dad has been in the "fund management" field (to put it very simply) for longer than I have been alive. I mention his name because his office address is where we would request any financial help be sent. That address is:

Wiersma Family Fund
85 East 8th St., Suite 150
Holland, MI 49423

This money will then go into the account and be disbursed to Kate and I as needed. It is Kate and my desire that these gifts be for the benefit of Max and Wes and not Kate and Mark. The committee will ensure that the funds are use appropriately. This will also be an anonymous donation with only the committee members knowing the origin of the funds. This has become an important feature for Kate and I as it allows us to focus on where and from whom these gifts are really coming from: God. For those of you that are technologically inclined, we will also be setting up a Pay Pal account tied to the bank account, I will get those details on the blog when they become available.

As always, please do not interpret this topic as a plea for money. We trust that God will provide for our needs as we focus on the needs of Max and Wes. This is such a difficult topic for me to discuss openly because I feel very unworthy.

For those of you that may have sent checks over the last number of months, I apologize for not depositing them. I was really having a hard time with how to best deal with the funds and make sure they are used appropriately and thought it best to get some outside parties involved. And even after we decided how to handle it, it took quite some time to get the account set up. The bank was convinced that this fund was really just a cover for a terrorist organization led by the mysterious Max and Wes Wiersma. We very literally have a document signed by Kate, myself and the three committee members that was drafted by a lawyer detailing how the committee will work and the funds will be used. Banks these days, I tell you what.

Tuesday, August 25, 2009

Extreme Makeover

Max's surgeries went as well as can be expected. The procedures took about 3-hours. Max did not have a great night last night, however. He got his IV put in late last night, and a blood gas was drawn from it shortly thereafter. It was one of the worst gases Max has had in months; 7.37 and 79. So the decision was made to intubate Max and put him on the ventilator this morning before his surgery. He would have had to be intubated for surgery this morning regardless, but because of the bad blood gas they decided to do it a little earlier. He is still on the ventilator as I am writing this. We expected that to a certain extent, and his gases have been a lot better post-op than they were early this morning. Right now his vent settings are 28 over 8, which are about as high as they were back before Max's hernia surgery and the miraculous move off of the vent to CPAP. That is kind of a bummer for us, but, as I said, his gases have been looking better. We knew going in that the docs planned to leave him on the ventilator for a while and get his gases looking more "normal." The other bummer is that Max's oxygen needs climbed to nearly 70% a few hours after he got back to the NICU nursery, so the decision was made to put Max back on the Inhaled Nitric Oxide (INO). Those of you who have been along on this ride with us will recall this substance. Max has been on and off of it 3-times. It helps dilate the capillaries in the lungs and aids the transmission of oxygen into the blood stream. It seems to be working, his oxygen needs are in the low 50s right now, but we cannot help but feel like it was a step back.

It has been a long day. We were at the hospital from 6:30 AM to 7:00 PM. Most people that do that get paid handsomely for their time. It was not a burden to spend time with the boys, but Max was not himself and that is hard for us to see. He is like a different boy now. He breathes through a hole in his neck and gets fed through a hole in his stomach. We likely won't hear his cry again for some time either. That was one thing we really liked in a strange way because his brother makes hardly any noise and cannot really cry. It has just been an emotionally and physically draining day for us.

Here is a picture of the "upgrades" that Max got today. The trach is quite obvious. Max is a chunky boy and he is also quite puffy right now (because of the all the IV fluids), so the actual port and collar are not visible. The other big thing is the port in his stomach. It has some gauze around it right now because it is fresh, but that will go away when it heals up. The feeding tube will be connected to this port and his feeding with be pushed into his stomach. He has at least 4 other incisions from the Nissin procedure as well. This kid hardly has a square inch of skin without some sort of scar on it.

Monday, August 24, 2009

Big Day for Max...and Wes?

Well, nothing ended up happening today. But we did find out that everything is going to be happening tomorrow. We found out at about 5:00 this evening that Max will be going down to the OR at 7:30 tomorrow morning, and he will be having really 3 and a half surgeries. The first will be what they call a "nissin." This is a procedure in which they wrap the opening at the top of the stomach, I think with part of the muscle around the esophagus (but I could be way off, I am recalling that info from about a 2-months ago) to prevent any reflux. Surgery #2 with be the G-tube in which they install a port directly into Max's stomach for feeding purposes. Surgery # 1/2 will be a circumcision...might as well just shock every system in the kids body while we are at it. And surgery #3 1/2 will be the trach. I think that is the order they go in, but I am not exactly sure. What I know is that when he gets wheeled into the surgical room where we cannot follow, the next time we see him he will have a lot of new hardware, but likely nothing on his face!! It has been 5-months and we have yet to see a completely unobstructed view of Max's face without tubes, hoses and tape. This is me looking for the bright side. All of our "primary" nurses has been great through this whole process: supporting us when we wanted to give Max a shot and the docs didn't, and also telling us when it was time to move ahead with the trach knowing how we felt about it. Their experience and the great relationships we have built with them over the last 5-months have been paramount in Kate and I finding some peace about this whole situation with Maxwell. So a huge THANK-YOU to Nurses Ashley, Becky, Cathy, Emily, Jessica, and Sara (I put your names in alphabetical order on purpose), and, although not our primary nurses, Amy, Anne and Monica (they have been there when we needed them to be)...we love you all. You have been through the trenches with us, supported us, fought for the boys when we couldn't be there and left an indelible mark on Max and Wes, Kate and myself. Now here we are, the night before the trach surgery. This has been in the making for 2-months. Trach surgeries usually don't get contemplated as much as Max's has. 9 out of 10 trach surgeries are because the patient has a bad airway and access to the lungs is constricted, and a lot of times are done almost on an emergency basis. Max is the 1 out of 10 where his airway is fine but his lungs are chronically sick. Kate and I have tormented about this for a long time. We did not want this for Max, but it is obvious to us that this is the right thing for him now.

He wanted us to know he is ready to rock and roll tomorrow:

And now for something completely different. Kate got a call from Dr. Dustin this morning and he said...and I quote, "I think Wes can go home on Friday." When Kate called me, I couldn't speak. It is every emotion you can possibly imagine all at the same time. The thought of him actually being here in our house seems like a cruel joke. I have been looking at their empty cribs every day for a long, long time. With everything going on with Max this week, we are actually going to push him coming home until Monday I think. That probably sounds ludicrous, but we have to do the following before he comes home:
1) Take the "Going Home" class
2) Get certified in CPR
3) Take the car seat class (you know, 90% of all car seats are installed incorrectly)
4) Learn how to thread Wes' feeding tube up his nose and into his stomach, testing to ensure proper positioning
5) Being trained on Wes' respiratory treatments, which are done 4-times a day (one of those times is at 2:00 in the morning...sorry Kate!!!)
6) getting set up with an Occupational Therapist who will work with Wes on bottle feedings
So, that is a lot of stuff to do before Friday with Max having major surgery tomorrow. Hope that all makes sense.

At the end of the day, the reality is that these kids will leave the hospital some time. A few times I didn't think that would ever happen. I am going to miss being a parking garage and hospital snob. I will not miss the cafeteria for one second. Unless they have chocolate covered raspberry ice cream. That is the only redeeming thing about the cafeteria. And Sour Watermelons. I guess we will have a number of weeks visiting Max yet to enjoy a lot of those things.

I am going off on a tangent. We cover your prayers for Max tomorrow. Or right now. Tomorrow is a really big day, a lot of invasive surgeries, a lot of room for error. Pray for the doctors, pray for the nurses, and pray for Kate and I. We will be at the hospital at 6:00 or so tomorrow morning following a poor night of sleep I am sure. But focus your prayers on a successful procedure, and a lighting quick recovery. We cannot move Max around too much or hold him for a few days, so we hope that those days will pass quickly. Thank-you to all of the faithful prayer warriors who have been with us through this journey. A journey that started on March 9. A journey that is taking a turn, but will not be ending in the near term. Thank-you for your support. Your prayers have sustained us.

Sunday, August 23, 2009

Here We Go Again...Again

Once again, it has been a long time since we posted an update. Although this is the second one in the same day...does that count for anything? No? Fine.
As Kate alluded to, it has been a long week. You faithful followers will no doubt recall a number of weeks ago when the docs were really pushing us to do a tracheostomy for Max. That was when he was still on the ventilator and no one thought we would be where we are today. Kate and I were under the impression that the trach talk was purely so that Max could come home (kids can come home even on a ventilator if it is by way of a trach). After Max's miraculous improvement on the vent and subsequent move to the CPAP, the talk kind of died down. Over the last week, Max has had a series of poor gases. His CO2 was in the high 60s for three days in a row. High 60s used to be great news back when Max was preterm and on the jet ventilator, but the standards have changed now that he is 6-weeks post term and growing like a bean sprout. The indication from the poor gases is that Max is being under-ventilated. In order for him to be properly ventilated, it means a move back to the ventilator, it looks like CPAP just isn't doing enough. As Kate mentioned, there also seems to be some stress to Max's heart. As we all know, the right side of the heart is designed to pump blood to the lungs for oxygenation, and the left side handles the movement of blood to the rest of the body. As such, the blood pressure on the right side of the heart is much less than the pressure created by the left side, which is the systemic blood pressure (what the doctors measure with that air bag thing around your arm). When someones lungs are as sick as Max's, it is not uncommon for the arteries to be constricted, or the lungs to have any host of other ailments that might make the flow of blood to the lungs difficult. As we all remember from 5th grade gym class, the more a muscle works, the larger it gets. This is great if you are talking about Lou Ferrigno's biceps, but the right side of the heart is not meant to be very muscular. Long story short, Max has what is called Pulmonary Hypertension of PH (not to be confused with pH, which is the acidity of the blood). If not treated in an expedient manner, this could be a very serious issue. So when Kate and I first heard this, the decision to move ahead with the trach was an easy one. One may ask why not just put Max back on the vent? The evidence would suggest that this will be a chronic issue for Max and likely require proper ventilation for many months/years to come to prevent issues down the road. That is what we want. We want whatever is best for Max. The reality of the trach just plain sucks, but it is time to do what Max needs and not what we want. I think the hardest thing for Kate and I is that we just want things to be "normal" for once. We just want the boys home. The trach will push back any sense of normalcy by about two years. This has been a long journey. The boys will be 5-months old this week. Our kids have lived in a concrete walled nursery for almost 150-days. They have never seen the sun, never been outside, never "seen" the dark, never "heard" quiet. On the other hand, we feel so incredibly blessed that we get to go see and hold and play with Max and Wes everyday. The thought of a trach just draws our minds to thinking about the future, and that is a very dangerous thing. We start thinking about the nurses who will be in our house 12-hours a day, having to buy a new vehicle, not being able to go anywhere and show the boys off for likely a year or more. We know this is all part of God's plan. The difficult thing is that Kate and I both felt that God has rewarded our faith in Him when we asked the doctors to wait on the trach surgery 6-weeks ago. He worked a miracle in Max's lungs, and now it seems like a loss. Had we done the trach then, Max could be home right now, his heart could be in better shape than it is and he could be more comfortable. God's plan has not always been evident through this journey, but it seems like His timing has been an easier thing to decipher. Until now. We prayed for a clear direction on the trach issue, and I guess we got one when Max's heart started showing signs of stress. It is just hard when God answered the very same prayer in a completely different way 6-weeks ago.

Max is also going to be having surgery to have a feeding tube permanently placed in his stomach. It is called a G-tube. G-tubes and trach almost always go hand in hand because a child with a trach does not need any risk of aspirating something from their stomach into their lungs. So the G-tube provides a port to feed Max safely. We will still try to teach him how to take a bottle, but the likelihood of him taking a 70ml bottle after a few months of his food bypassing his stomach altogether is not very good.

From what we have heard, Max will have his G-tube surgery on Tuesday and we don't know when the trach will happen, but it will be this week. We had heard it might be tomorrow, but the G-tube surgeon said he would rather not do the surgery right after a trach procedure. So who knows. We will keep everyone updated as soon as we hear anything, which will probably be about 5-minutes before they take Max to the operating room.

Trach for Max

This week has been challenging for Mark and I. Thursday we came to the decision that Max will need a trach. We had thought that we would avoid it and just spend a couple more weeks in the NICU letting his lungs develop, however we recently found that his lung issue was creating a heart issue as well. This decision has been easy and difficult at the same time. Easy because we know it is the best thing for Max, and difficult because it isn't what we wanted for him.
Wesley is doing quite well. He is on "home flow" nasal canula. He has also had the opportunity to take a bottle. He wasn't quite sure about it, he gagged and coughed a lot. Thankfully it is something we can continuosly work on. Even if he doesn't get it right away he could come home with gavage feedings. Mark and I will just have to learn how to put in a feeding tube. There is a chance he might come home in a month or so.
Please pray for Max's little body going through surgery again. For fast healing of his lungs and stopping the damage to his heart. Pray for Mark and I to be strong for our little guy. Also, that we quickly learn all the different things we will have to know as his parents.

Hopefully later tonight we will have more details about when surgery will be. And, have Mark describe exactly what the trach is and means for Max. He is MUCH better at that then I am.

Monday, August 17, 2009

Mostly good

The boys had a "mostly good" weekend. Max had a bit of a crummy gas on Friday night (7.37 and 67 for those of you keeping score at home) and the decision was made to put his CPAP pressure back to 8 (up from 7). This was a bummer for us because we really had to fight to get them to move to 7, and Max did so much better, at least outwardly. It seems that the changes from pressure to pressure have not had much of an effect on his gases, but if the docs think they are seeing an upwards trend in his CO2...look out, changes are a comin'!! Nurse Ashley is on for the next 3 nights, so she will do everything in her power to get us back to a CPAP of 7 and on our way to 6. Max's oxygen needs have been hanging in the 40% range, unless he gets to take a nap with his Dad, then it is more like 35%. He tipped the scales at 9 pounds 15 ounces tonight!! So close!!! He has been getting a diuretic called lasics over the last few days to really dry him out, so a stall to the weight gain is expected...but he is on his way back up!!

I was looking through some pictures and realized why Max had such a bad gas on Friday. Someone thought it would be cute to quick put him in this outfit and get some pictures before his Dad got to the hospital. Well Grandpa B...I hope you like the pictures, because it may have set back Max's lung development by a week or two. I am suprised it didn't burn his skin.



Wes had a good weekend. He continues to do well off CPAP and has been requiring very little oxygen. He seems to have the breathing thing pretty much figured out!!! So now the next hurdle is feeding. They moved him down to 1-hour feedings on Friday, then 1/2 hour feedings on Saturday. That was a little much and he had some issues with spitting up, so they moved him back to 1-hour. then today they moved him back to 1/2 hour and said that no matter what, they are going to do at least 24-hours worth of feedings (8 of them) at 1/2 hour to give his stomach a chance to stretch and adapt. Please pray with us that his stomach will do just that. He got his first 1/2 hour feeding at 2:00 this afternoon and then again at 5:00...so far so good!! Wes made another major accomplishment tonight...he hit double digits!! That's right folks, Wesley weighs 10 pounds even. I cannot even believe it. He weighed 1 pound 6 ounces at his smallest about 4 1/2 months ago. God is so good.

I had a little talk with him about how proud I was that he has come so far and fought so hard. It was a very special moment...then he started tooting like crazy, and he found that very hilarious. I had to smell them and was not laughing nearly as hard as he was.


Here is a picture of me holding Wes from May 12...more than 6 weeks after he was born. I cannot believe how tiny he was and how much he has grown!!

Thursday, August 13, 2009

Uphill?

The boys continue to be very stable and make good progress. Max is down to a CPAP of 7, and seems to be much more comfortable there then he was at 8. His oxygen needs are actually down a little bit, more in the 35-40% range than 40-45 like he had been before the move to 7. This is almost certainly due to the fact that he is more comfortable closing his mouth, which allows the CPAP to deliver both the pressure and the oxygen to his lungs. When he was fighting the higher pressure of 8, he would never close his mouth, so much of the support from the CPAP and the oxygen never actually made it to his lungs. Thanks to Nurse Ashley who really campaigned for us and got the docs to make the move to 7...he has been a much happier baby since. Now that Max has been so stable on the CPAP, talk of the trach is starting to really pick up steam. 6 different docs in 4-days said something to Kate about it. Yep...we know...we are not ready to pull the trigger on a very permanent, life-altering surgery when our God just performed a bonafide miracle in this boy's lungs not 3-weeks ago. Not only that, but he is still improving, still growing and still getting stronger. Kate and I fully understand that if he got a trach tomorrow that we could more than likely take him home in a month. But we have come this far, and we are going to do what is best for Max for the next 90-years, not what is easiest for us over the next 90-days.

Wesley has been an absolute rock star lately. I think I talked about how he was off CPAP but on high-flow nasal cannula, which is really a lot like CPAP, but a little more comfy. Well he is down to low-flow nasal cannula full time, and not only that, but he is down to 0.10 liters of flow, which is almost as low as he can go before they start trying him without oxygen support altogether!! That probably won't happen for a while, but we leave every possibility open for God. the other big change for Wes is that they have started to compress his feedings over a short time period. He had been getting fed over 2 hours, so his feeding of 70 ml is given to him consistently over 2-hours versus a baby taking a bottle in a 10-15 minutes (I really have no idea how long it takes to feed a "regular" baby, so that could be way off). He is fed over time to prevent any refluxing and then aspirating that into his lungs and setting back progress for weeks and weeks. Now that his lungs are getting strong and he needs minimal support from a respiratory perspective, it is time to start working on feeding...the last hurdle before he comes home. Anyway...they have been slowly weaning his feed times down, and they moved to a 1-hour feeding today, and he seems to be handling it well. Please pray that he continues to do so. If he does, they will try 1/2 hour, then basically a gravity feeding, and then a bottle. Talking about this all seems like a pipe dream. In a weird way, it is hard to picture the boys ever living in this house. We have become so accustomed to them being in the hospital that it almost feels strange to think about them being home. Hard to explain.

Now for some videos!! I was sick like a dog for a good 5-6 days and not able to get to the hospital for a whole week. That really sucked - no other way to put it. So, I had Kate take lots of little video clips with our digital camera just so I could see them move and make noise. She got some good ones. Here are a few of our favorites:

This is Max playing with his toys. Kate and I think he is a very smart little boy!!

video

And this is Wesley...this little guy really likes his pacifier!!

video

As the title suggested, there is a feeling that we are maybe climbing the hill and actually making some progress. For months any step up seemed to be followed by fall off a sheer cliff. But over the last 2-3 weeks it really feels like we are stepping on firm ground and moving forward. We are still cautious because of the rocky road behind us, but thankful for the way God has redeemed it into an amazing journey. I am reminded of the song by Jars of Clay called "The Valley Song" where the chorus says, "I will sing of your mercies, that lead me through valleys of sorrow, to rivers of joy." That really says it all. What a mighty God we serve.

I did want to mention that the boys had an eye exam recently, and both boys have mature eyes!!! That is such amazing news, and a true rarity for 24-weekers. Yet another way that God has answered our prayers in a way we would have never thought to ask. We so often prayed that they would not have ROP, an eye disease that effects so many micro-preemies, but I am not sure I ever prayed for the boys to have "normal" eyes. That seemed like asking too much, but that is why God is God and I am not.

Sunday, August 9, 2009

Quick Update

I am VERY happy to report that our prayers have again been answered, and Wesley is still on nasal cannula!! In fact, the CO2 of 66 that he had on Friday afternoon was the highest it has been since. Gotta love the way God works. Max is also doing well. Max weighs 9 pounds 10 ounces and Wes weighs 9 pounds 2 ounces. That is like real babies!!

Sorry for the sort update, I am still feeling like garbage and it hurts my head to look at a computer screen. I would appreciate prayers for quick healing from whatever it is that I have because I have not seen my sons since Wednesday night. Kate has been not only taking care of me but also taking care of the boys...I am guessing she would rather be at the hospital than dealing with me. She takes lots of pictures of the boys for me, which does help, but I look forward to holding them again sometime soon.

Friday, August 7, 2009

19 weeks

Once again, sorry for infrequent updates. The boys are doing pretty well. Max is still on a CPAP of 8 and his oxygen needs have been in the 40-45% range. He continues to gain weight, maybe a little quicker than the docs would like, and as of last night (Thursday), he weighed 9 pounds 10 ounces. They have increased his dosage of Aldactazide, a diuretic designed to help pass any excess fluids. He continues to use his voice to get attention when he feels like getting held...which is pretty much all of the time.

Wes is currently on off CPAP and high-flow nasal cannula!! He is coming up on the 48-hour mark, but the docs think he is working a little too hard. If his blood gases show that his CO2 is in the 70s, he is going back on CPAP. His last gas was this afternoon at 2:00 and his CO2 was 66, up from the highs 50s the night before. It seems like it is a pretty good possibility he will end up back on CPAP soon, but God has answered so many prayers in ways we never could have imagined, so we a certainly not shutting the door to a miracle at this point. He is such a sweet little boy without his SCUBA apparatus, and it is just so nice to be able to easily move him around without the CPAP junk. The thought of going back on CPAP will just feel like coming home is farther and farther away.


Both boys are absolutely entranced by their mobiles. They literally follow the little dangling fish all the way around the rotation of the mobile. Some people told us early on not to even get mobiles because kids don't/can't focus on them...that is not the case for Max and Wes. Max has another toy in his crib that he has really been enthralled by as of late too...as you can see in the picture below:


I have been pretty sick over the last few days and have not been to see the boys since Wednesday evening. That really sucks. I am starting to feel a little better, and because of the situation with the boys, I did go to Prime Care to make sure I did not have the flu or some over infection. I suppose after 5 months of "living" in a hospital, the body is bound to pick up a bug or two somewhere along the line.

Monday, August 3, 2009

Good weekend

Sorry for the long time between posts. The boys had a good weekend. I will start with Max so I don't get anybody confused (including myself). Max has been doing well on CPAP. His oxygen needs have been in the 38-44% range. His gases had been running in the mid to high 50s, but on Friday he had a gas with a CO2 in the low 60s, so the decision was made to move the PEEP on his CPAP up from 8 to 9 (10 is the highest setting, 5 is the lowest). It was a proactive move to keep his gases looking good and give him as much support as they can without resorting to the vent. He has been stable and the docs moved him back to a PEEP of 8 today. Please pray with us that Max's gases look good and that his lungs continue to grow and expand and the muscles that help him breathe continue to get big and strong. Max has certainly learned how to use his new found voice. Turns out, if he cries, either his nurses, Kate or myself, runs to his side and usually ends up holding him and rocking him back to sleep. It is really just a ploy for attention I think...I mean, what can he possibly have to be upset about? Max also tipped the scales at 9 pounds and a fraction of an ounce tonight!! 9-pounds? We are getting awfully close to double digits buddy!!

Wes had a good weekend as well. He continues to do very well with his weans and is up to 3-hours twice a day. His breathing gets a little bit labored towards the end of the wean, but his oxygen needs have been very low...lower than what some kids go home from the NICU with. That is very encouraging for Kate and I. We have had a lot of people asking if we have any idea when the boys are coming home. The docs have not really given us much of an idea, but what we can gather from nurses and just our own knowledge of what it takes to go through the 'exit" doors of the NICU, our best guess right now is that maybe Wes will come home in September sometime and Max will likely be more like October/November depending on if we end up needing a trach or a G-tube (a feeding tube surgically placed in his stomach for feeding). We are just going to focus on today for now!!