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.

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!!

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!!

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

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.

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.

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.

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!!