Baby Steps Forward

Peter took a few baby steps forward again. He no longer requires nitric oxide and the catheter for his urine was also removed. Fewer tubes! His chyle leak continues unabated, however, and Dr. Overman said that if the volume of fluid coming out his left chest tube does not diminish by midnight, Peter will have to be taken off the feeding tube (enteral feeding) and be fed intravenously again. Please continue to pray for us and for Peter about this situation.

Peter spent a good time awake today and we were able to spend some quality time with him. Now that he is being weaned off more and more medications, Peter is more alert when he is awake. Betsy got to change his diaper today, something few parents really revel in, but when you're in our situation, it's a kind of special treat to be even in a position to do it at all. Daniel also got to touch his brother for the first time and he was quite thrilled by it. Can you imagine: until today, he had never had the opportunity to touch Peter?! Daniel is definitely getting more used to the idea of having a real baby brother.

Two photos

This one was taken today:



Finally, Peter is off Heparin (a blood thinner, which meant we weren't allowed to cut his fingernails). But now: no more glamour nails.

One Step Forward, One Step Back

Today, we heard a lot of encouraging news. Peter's heart rate is more normal (about 130bpm) and the blood pressure seems better too. The nurses have found that the primary method of measuring his blood pressure is not as reliable with him, leading to lower readings. A secondary method appears to be more accurate and it shows his blood pressure at about 70/50, which is quite acceptable. Doctor Moga, one of the surgeons, removed two of the four tubes in his chest, and they have further reduced a number of medications. He is now almost completely off morphine; he only receives it incidentally now rather than on the constant drip, and he has been started on methadone. Peter has also been further weaned off the nitric oxide.

There was, however, one very annoying development about which we covet your prayers. During the night, a milky fluid started leaking from his chest cavity through one of the two remaining drainage tubes. This is called chyle and is a mixture of lymph and free fatty acids. This sort of leakage out of the lymph nodes into the thoracic or abdominal cavities is quite common with children like Peter who have had some trauma to or blockage of the pulmonary veins or arteries. Essentially it is a bad reaction to fat in the diet, though Dr. Overman explained that chylothoracic leaking is not at all well understood. Since it is linked to certain fats, the primary method of treating it is to eliminate these fats completely from the diet, but other things may need to be tried too if the leakage does not stop (which may include medication or even surgery).

For the next three months at least, Peter will have to remain on this fat-free diet. This means that he is not allowed to have breastmilk but will have to be fed with a formula (which includes some other types of fats) for three months. (It is possible for Betsy to process her milk and skim the fat off, but we will have to look into this.) Also, until this situation is resolved, Peter will not be able to go home, though Dr. Overman said that Peter is likely at least two weeks away from discharge anyway, because he is still on the ventilator. Perhaps the chyle leakage will be resolved by then. Please pray that this new problem will be resolved soon.

Despite this disappointment, we do hang on to the thought that Peter is doing better day by day. The chyle leakage is not unexpected and should have no impact on his treatment and recovery; it is mostly a nuisance.

Turning a Corner

We left the hospital a little worried on Wednesday afternoon when we learned, just before leaving, that Peter's MRSA screen had come back positive. We didn't know much about this bacterium but the hygiene restrictions placed on staff dealing with Peter were a little perturbing. We were reassured this morning that it probably posed no danger to Peter or anyone else. Right now it looks like he is merely a carrier of this thing--like about 30% of the population--without showing any symptoms. Visitors just have to make sure they thoroughly wash hands after visiting with him, but no further restrictions have been placed on us (though staff have to wear gloves and gowns when working with Peter).

We talked to one of the cardiologists today and she said that Peter is making quite rapid progress. Her actual words were, "Peter really turned a corner this week." His heart rate is getting more normal and his blood pressure crept up to about 65/45 today. He is also being weaned off a number of medications. That includes the morphine he has been on. This might be the hardest for him to get off because morphine is habit-forming. Peter is getting more actual food (Betsy's milk) through a tube in his nose and once the current medical intravenous fluid bag runs out they will not reorder it. The levels of oxygen and nitric oxide in his ventilator have also been lowered and the drain tubes are producing less and less fluid. The doctors are hopeful that the tubes will be able to come out soon and that the ventilator might not be needed much longer either. They are hesitant to give us any actual dates and predictions but as a rough estimate we have been given about 7 days until Peter might be able to leave ICU and go to the normal pediatric ward. Once he makes it to that department, he could be home within another week.

Over lunch this afternoon, we read Psalm 112 and while it did not apply specifically to the situation of a sick child in the hospital, I found it heartening to read of the comforts afforded to believers. What is a believer promised? "He will never be moved (...) He is not afraid of bad news; his heart is firm, trusting in the LORD." We left the hospital feeling a lot more comforted than yesterday.

Elvis Has Left the Building

Well, my mother-in-law has anyway. Anita has been good to us by staying on an extra week and we don't know how we're going to cope without her... Peter seems to be doing well. His heart rate is better (150s) and his blood pressure is also a little better (60/45).

Here are a few pictures:

Grandma with Peter

Mama, big brother Daniel and Peter

And here a brief video from this afternoon (if you don't mind the Dutch):

Successful Surgery

At 3:50pm, Dr. Overman (the surgeon) came by and told us that surgery went well. The large tubes that had connected Peter's heart with the ECMO machine have been removed from his chest. They also suctioned out 30cc of clear fluid in his lungs and Dr. Overman was actually able to close the wound. Before the operation, they had not been sure whether they would be able to do that. It depended on swelling and fluid in the chest cavity. It's very good that Peter doesn't have to have another surgical procedure just to close his chest. Peter is doing well and Dr. Overman said his heart looked good. Peter's heart rate is slightly elevated (about 180bpm) and his blood pressure is a little "soft" (low) around 55/45, but that is not unusual after an operation. This is very good news. (By time of posting, Peter's blood pressure was up to about 63/50 and his heart rate was about 170bpm.)

Surgery at 1:30pm

Please pray for Peter. At 1:30pm he will be undergoing his second open-heart surgery in his brief life. True, it is only for removing the ECMO tubes and nothing is technically being done to his heart, but still, this is not nothing.

And now for those tubes...

We immediately went to the hospital after we heard that Peter was off ECMO (see previous post). We stayed with him for about 3½ hours. He slept nearly the entire time--of course, he woke up at 3:40pm, a few minutes before we wanted to leave, so we stayed a little longer!

Peter is doing pretty much the same off ECMO as he was on it. The tubes are all still in place; they just cut them off about 5 inches out of his chest and wheeled the machine away. Just in case, they will be monitoring him for about 24 hours and they could reuse the tubes in case he should need to go back on (but he won't need to!). Tomorrow morning, the doctors will assess the situation and if all looks okay, they will take him into surgery in the afternoon and remove the arterial and venous tubes, which are actually stitched in place inside his chest. He will then still have drainage tubes coming out of his chest. The doctor did decide to insert an extra drainage tube in his side, which seems to be helping. Everyone seems to be happy with the volume of fluids he is losing right now, though this is with considerable help from diuretics (Lasix and Diuril). The ventilator is doing a little bit more work at the moment, and he will remain on that for quite a while yet (at least a week, we guess).

We were very pleasantly surprised by the move away from ECMO. Apparently, it had become a choice between "changing circuits" again or just taking him off, because the ECMO was getting old again and eating up platelets. So, here we are and we're very happy about it.

Off ECMO!

We were still getting ready to leave for the hospital when the duty nurse called us. She informed us that a little after 11am this morning, Peter was taken off ECMO. Yay! He is doing well at the moment. Please pray that Peter will continue to be stable and will gain in strength.

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By the way, I have adjusted the comment moderation settings for this blog. Turns out they were set to allow only comments from registered users. Now anyone should be allowed to post.

Baby Snores

Sorry to keep everyone waiting but I was just too tired to post last night. And that despite very good intentions we had yesterday. For one, we thought we were smart by arriving at the hospital early (well, before 11am...) hoping to spend some more quality time with Peter. But Murphy's Law kicked in. The doctor had changed the bandage on his chest earlier in the morning and they had to sedate him quite a bit for it. So, when we arrived, Peter was completely out of it. After watching an enormously stoned baby for about half an hour, we retreated to have lunch.

The nurses told us that they are still working on the fluids. He is peeing quite a bit but they want to increase that even more. On Saturday, the ECMO was turned down to 40% and the pressure on the ventilator was increased a little, in the hope that this would help the lungs expel some of the excess fluid. His dose of diuretics was also increased. Interestingly, Peter is snoring and this is a good sign. It means that there appears to be room between the ventilator tube and his windpipe, suggesting a loss of fluids (despite what the machines are measuring otherwise). He is also blowing lots of bubbles: more fluids leaving his body.

On Sunday, after going to church in the morning, we went to the hospital. The ECMO flow was now down to 30%. One of the nurses told us that the doctors have a tentative plan to reduce the ECMO to 20% on Monday, then to 10% overnight (Mon to Tue) and then have an evaluation on Tuesday morning. If Peter does well on blood pressure etc. then they will go ahead and take him off the ECMO. This does not mean that they are not still aggressively trying to deal with the fluid situation, but they are now reasoning that he is doing quite well despite this. In the end, they may prefer trying to control the fluids with the ventilator alone. The ECMO is in a sense a mixed blessing: it does provide his body with the needed rest, but it also has a number of risks, one of which is that it tends to make it harder for patients to get rid of fluids.

During our visit, Peter was very drowsy. When we first arrived, he was fast asleep. The nurses had told us that they had changed his morphine from periodically to a constant drip, which makes him less active. So, we decided to have lunch first. After lunch, we returned to find Peter wide awake and again taking a great interest in the mobile. He also looked at our faces very intently and seemed to be generally very happy to be awake. After about 20 minutes, we inquired how long he should be awake and one of the nurses (Andy) said he was getting ready to sedate him again because he thought Peter was wearing himself out. Betsy suggested that if we just stood back, he might drift off to sleep on his own, without chemical inducement. This proved to be the case: within five minutes, he was fast asleep again.

All in all, despite the little real time we have been able to spend with Peter, we are quite happy. The little time was quality time and there does seem to be a hopeful prospect for him soon.

Fluids

We learn quite a bit about patience in this process. There was no real medical progress to report during our visit today. The flow of the ECMO remained the same and Peter was doing well generally. Yet the doctor remains unhappy with the fluids visible on his lungs in repeated X-rays. When I spoke to Dr. Overman today he suggested they may put in a tube into the area to drain these fluids, but he did not sound convinced of this solution and so they have been putting this decision off. In the meantime, he has put Peter on yet another diuretic drip and increased his urine flow. The ECMO nurse said that we should not expect any change in the ECMO treatment until Peter’s fluid problem is under control. It seems likely that we will be in this holding pattern for the weekend. One positive piece of news we heard is that the ECMO is providing slightly lower gas levels for Peter's blood and this may mean, according to the ECMO nurse, that the fluid is reducing anyway and that Peter's lungs are taking over some of this function.

Despite this somewhat disappointing news, we had a good time with Peter at the hospital. He was very wakeful and he has been enjoying the mobile that a nurse hung up in his room. Since he was turned the other way today, we had to move the mobile too because when he woke up, he was visibly looking around for it (and could not see it). Once it became visible again, he was mesmerized by it. We do find it a little exciting that they have started to feed Peter his mother's milk through a tube in his nose, though they continue to also feed him intravenously.

We have been blessed with visitors and good gifts today. Two families dropped meals off today and we also saw our friend Kristen and our pastor at the hospital.

Here is a short movie of Peter and Betsy at the hospital today:

At Ease

No progress today, unfortunately. Changing circuits apparently causes the patient to retain fluids and Peter has to get rid of the excess fluid before the doctor dares move any further in weaning him off the ECMO. He had put him back on a constant diuretic rather than the 6-hour dose, with the expected result: he produced more in 8 hours than in the entire preceding 24 hours. X-rays of his lungs revealed that quite a bit of the fluid is trapped in or near his lungs and this needs to improve. The flow of the ECMO remains at 50ml per kilogram.

The nurses assured us that they thought he was doing splendidly. Nothing out of the ordinary and making good progress. Peter is the darling of PICU, certainly of the nurses doing duty with him. Interestingly, we were told that he is not the only patient in the unit at this very moment who is being treated for “total anomalous,” as they call it for short.

Today, we finally managed to remember to bring the "get well scroll" that children from our church made for Peter, and with the kind help of a nurse, it got hung up in his room.

Amidst the emptiness of our lives—the emptiness we feel every time we leave the hospital, the emptiness of Betsy’s womb, and the emptiness of the crib that awaits him in our house—we are strengthened by the assurance of God’s mercy, and His particular mercy on children of His Covenant. There are numerous passages that show the special regard He has for the children of believers, e.g.: “But the steadfast love of the LORD is from everlasting to everlasting on those who fear him, and his righteousness to children’s children, to those who keep his covenant and remember to do his commandments” (Ps. 104:17-18), “Praise the LORD, O Jerusalem! Praise your God, O Zion! For he strengthens the bars of your gates; he blesses your children within you” (Ps. 147:12-13), “But Jesus called them to him, saying, ‘Let the children come to me, and do not hinder them, for to such belongs the kingdom of God” (Lk. 18:16), etc. etc. In mercy He deals with us.

Changing Circuits

Today, Peter had to be put on a new ECMO machine. They called that “changing circuits.” It was explained to us that the ECMO gets dirty on the inside after a number of days and does not function as well anymore. The machine was apparently starting to consume platelets and other blood products, which is not a good thing for Peter, of course, because it means his blood cannot clot as well. So then they pull out another ECMO and switch him over, and clean the old machine. Unfortunately, this meant that we had a lot less time to spend with Peter. The whole switchover is not supposed to last longer than about 30 minutes (most of which goes into preparing the new machine to all the right settings), but for some reason they had not even started the switch after the forty-minute lunch we had decided to take once they warned us of the impending switching procedure. Despite this interruption we had a good time with our little boy. He woke up for a little bit and also tolerated the “changing of the circuits” quite well. The ECMO has been reduced to about 50% (actually the number seems to stand for 50ml per kilogram, but it corresponds roughly to a percentage, so that’s what they always tell us). The ECMO specialist told us that the actual period during which Peter was not being supported was 38 seconds and that his vital signs (heart rate, blood pressure, oxygen saturation) did not waver during this time.

Both midwives came by (both Rachael McGraw, our primary midwife, and Maureen Dahl, the secondary one). They were unfortunately not able to see much of Peter because of the ECMO switchover, but we had a good time together over lunch. It was VERY hot today: around 95 degrees Fahrenheit. There was also a very strong wind. A friend of ours, Carmen, had brought us a picnic lunch in the morning and we took it to the hospital.

We also talked to the surgeon. He is the one responsible for the ECMO treatment (and for taking Peter off of it). He said that he was reasonably optimistic about Peter’s health. The lungs still appear somewhat abnormal on X-rays but this is apparently not unexpected in these cases. Hopefully, Peter can be taken off ECMO in a few days. When that happens, Peter will be on a ventilator for a while.

I am very grateful that Betsy is recovering so well. If you think about it, it is almost miraculous that she is almost completely healthy again. She also needed little extra rest even from two days after giving birth, and she has shown few signs of fatigue. A little bit of ibuprofen pretty much gets her through the day as usual—or whatever passes for “usual” at the moment. We were also in church “as usual” on Sunday evening (we were in the hospital in the morning), and the more I think about it, the more I am struck by a comment that our friend Christy made on her blog: “Yes, really!” Betsy really was in church after four days! Do not let us forget those blessings.

Tuesday Visit

Not much to report today (and sorry, no new pictures). Betsy and I went to see Peter in the early afternoon. I dropped Betsy off first while I ran an errand at the University and then met up again around 1:30pm. Our pastor, Jim Sawtelle, also came by for a while to visit with us. The ECMO has been dialed back a little further, now to 60%, and he is no longer receiving constant diuretics, but instead only once per 6 hours. They are worried that these high doses might damage his kidneys. Peter was asleep during the whole visit. I guess he had to rest up after his active day on Monday. The doctors may try to take him off the ECMO completely some time later this week, but there are no details yet.

This is not an easy time for us and yet we seem to do it. You have to; it's your kid. Betsy has been holding up well, though it's certainly much harder for her than for me. Not only is there the physical bond between mother and child that pulls harder on her, this is also very fresh after giving birth (he's not a week old yet!) and she is still recovering physically and hormonally from that event. We feel strongly supported by everyone: family, friends, the church, and also the people at the hospital. We do also seek comfort with God. I know I am not such a giant in the faith as to be able to always do that effortlessly but He remains our Rock and our Salvation. Jim read with us a portion of Psalm 139: "In your book were written, every one of them, the days that were formed for me, when as yet there was none of them" (v. 16). These verses remind us that God is in charge of all things and that, even if things do not go according to our plans, nothing can happen apart from His will.

Eyes Open

Peter had a good day today, especially for us. Not only is he doing well with the ECMO at 70%, which means his own heart is doing 30% of the work, he was also wide awake for a whole hour during our visit! Eyes wide open and really looking at us. Betsy also got to wash his hair, change his diaper and wash him off a little. For the first time, we had the feeling that we had a real child. It looks like they want to slow down the transition off the ECMO, so he could be on it for a few more days.

Betsy was able to talk briefly with one of the cardiologists. According to this doctor, their greatest concern is the possibility that Peter's pulmonary veins will not be able to function properly, i.e. not be able to take the oxygen from the lungs to the heart. That would be a severe handicap about which nothing could be done, except lots of medication. Peter is currently already receiving these medicines, but they remain hopeful that they will be able to wean him off those and that he will be able to breathe on his own. The doctors are no longer really concerned about his heart.

Peter's Progress So Far

Peter's operation took place last Friday. First, he was moved from NICU (Neonatal ICU) to PICU (Pediatric ICU) and he was prepped for the operation there while we (Michel, Betsy and our pastor Jim) watched. Among other things, they had to place different tubes. Our pastor, Jim Sawtelle, spent a good five hours with us in the hospital and he was a great comfort. The midwife who delivered Peter (and Daniel too!), Rachael McGraw, also dropped by for a while. Peter was taken to the operating room around 2 o'clock. We were shown to a waiting room, but we actually went to have lunch instead.

Naturally, we talked to the doctors, both before and after the operation. The cardiologist (not the surgeon, obviously) came out during the operation a few times to discuss progress. The actual procedure (moving the pulmonary veins so that they would enter the heart in the right place) only took about 1 hour, but they needed a lot of time to stabilize him. And then afterwards, they observed him for an hour or so as they took him off the heart-lung machine. In the end, the doctors decided that they were not entirely satisfied with the way he functioned on his own and they decided to put him back on it. That way, his heart and lungs can have a rest while Peter recovers from the operation and gets some strength.

After the surgery, the surgeon told us that the procedure as such had not been very hard. There was more room to do it than they had anticipated. The doctors now worry about his recovery from the operation (after all: he was only 3 days old!) and a possibility that the veins leading from the lungs to the heart may have some other defect than just this wrong connection. We will have to wait longer (perhaps much longer) to get more clarity on that second concern. They expect that Peter will have to remain in the hospital for another month.

The ECMO (the name for the heart-lung machine) is a scary contraption that looks more complicated than flying the space shuttle. Two nurses were constantly busy adjusting something on Friday night after the surgery. We were told that we should use the time while Peter is on ECMO to be at home as much as possible because his condition is very unlikely to change dramatically. That way we can be a little rested when, later in the week, the doctors will try to take him off the ECMO. We will probably spend whole days in the hospital then, as it will likely be touch and go for a while.

On Saturday, we went to the hospital only for a brief time--Betsy, Daniel, Anita and myself. We arrived around 3:30pm. Peter looked a lot better than expected. The nurses had warned us that patients on ECMO often puff up quite a bit as a result of retaining fluids. But we could hardly see anything. The nurses also were much calmer than directly after the operation. They had obviously stabilized him and he needed hardly any active attention. This was the first time that Daniel got to see his little brother. He seemed little interested really, but in fairness, he was majorly sleep-deprived!

Betsy and I feel greatly blessed with the many offers of help from many, especially from people in church. Food is offered from all sides, as well as other types of help. We are glad that Betsy's mother Anita is with us.

On Sunday, Betsy and I went to the hospital alone for a few hours. He continues to do well and also looks pretty okay (as long as you can look past all the tubes, etc.). I (Michel) was lucky enough to see him wake up briefly. I didn't even know that that was possible, even to the extent that he really woke up. Yet he really did open his eyes (somewhat sleepily, but nonetheless) and wiggled his armes and feet quite boisterously. I am sure he saw me. Betsy, unfortunately, was away at the time and missed it. After 10 minutes, the nurses made him go back to sleep, afraid that he might do more harm than good, though they assured me that it was healthy for him to move about a little. It helps him get rid of fluids.

A little later in the day, we talked to the nurses on the phone. The surgeon had come by and he had adjusted the ECMO to about 80% capacity (it had been 100% before). Apparently, he was responding well and we hope that he continues to stay at that level during the night. It is a good sign, but there is still a long road ahead.

Finally, here are a number of pictures of Peter.


(Also visit the Dutch version of this blog: vanderhoekpeter.blogspot.com).