Tuesday, September 29, 2009
James was weaned off his morphine drip today, so it was his first time without any pain medication and although he did cry once or twice, he's been recovering quickly and is pretty easy to soothe. They are lowering the flow on his nasal cannula and he might be able to come off of it within the week. Now that the huge ventilator tube is out of his mouth, he's learning how to suck and often sucks/chomps down on the tube in his mouth & he's also now learning how to use a pacifier. It's funny how all the normal newborn baby things seem like such an accomplishment to us now! :-)
Our second outing was a trip to Little Clippers for Maddie's new haircut. It's gotten long enough that she's started twirling it again and after 3 days in bed at the hospital last week, it was turning into a rat's nest. :-) Here's the before picture...
and here's the after...
Monday, September 28, 2009
Dana and Travis couldn't handle being half-way around the globe during all the surgery and funeral craziness of last week, so they decided to fly home at the last minute! Horray! It was so wonderful to see them and hang out, even if it was only for a few days. Every time they come home it just feels like things are complete.
On Saturday we just hung out at our house and watched football games and played with Maddie (who is back to her old self--except for bladder pain every time she urinates, poor girl!--and has TONS of energy). Maddie recently made up a new creative play area--she opened her own restaurant in our kitchen nook. Apparently it doesn't have a name yet, but she has decided that it was decorated by an interior designer named Rudy! (Yes, that was totally her doing and I have no idea where she got that from, but the name is perfect, don't you think?!) If you ever visit her restaurant, know that she does make meals to-order but there is no take-out...you have to come and sit down if you hope to get any food! Her menu specialties (all made out of mini tart tins and her plastic beads, of course) are banana cream pie, macaroni and cheese and minestrone soup. Delicious! :-)
James has been doing amazingly well since his surgery on Friday and has been progressing even faster than his doctors anticipated (yay for answered prayers!) He was able to come off the ventilator on Sunday and now has just a small tube in his nostrils just in case he needs extra oxygen, but he's barely needed it and I'm guessing he'll be able to have that taken off too within a couple of days. Keith and I both got to hold him this weekend, which was such a joy!
(The tube in his mouth is to help empty his stomach, since his intestines aren't working yet. I'm sure he'd love for that to be out too, but that one he'll have to get used to for a good long time.)
Our Little Stinker kept pulling all his tubes, so they had to glove him up!
You keep that fighting spirit up, buddy! :-)
(you can also see the scar on his back from the PDA surgery, which so far hasn't seemed to bother him too much)
Friday, September 25, 2009
Thanks again for all your prayers and continued support of us during this long journey. Hopefully this will be the last traumatic event for awhile! :-)
Tuesday, September 22, 2009
For the past two days our nurses have commented about how he's much more awake and alert, sometimes staying wide-eyed and curious for up to 20 minutes at a time. Up until now, we've only got to peek at his eyes off and on for a few minutes at a time before he's asleep again. Our sweet nurse Nicole made us this precious sign last night and now it's hanging on my bedside table.
A condensed update is that James continues to heal and be stable, but since his PDA (heart-lung valve) remains open and it should be closed by this age and could pose a risk of damage to his lungs and stomach/intestines due to incorrect bloodflow, the surgeons have chosen to schedule his surgery to close this valve on Friday afternoon. We'd been hoping to avoid this week altogether (Maddie will be in the hospital until Thursday or Friday & my grandma just died and her funeral will be on Thursday morning), but no such luck. Please continue to hold us in your prayers, as the phrase "when it rains it pours" has certainly become reality in the last week! I swear, the hospital staff must be beginning to think that we have a serious case of bad luck going on! If one more bad thing happens, I might just have to curl up under a rock somewhere and hibernate for the winter.
We'd never taken Maddie to OMSI before. She's been to the zoo and the Children's Museum multiple times, but for some reason I always thought of OMSI as a "big kids" place...until I read about their Science Playground area for 2-6 year olds. Now in Maddie's eyes this place even trumps the zoo, if you can believe that! Here are some pics from our afternoon playing together...
Maddie loves toy kitchens and stores and food, so she was in heaven!
Getting cozy with Grandma Frank. Keith's mom Darlene (who lives in Ohio) has been staying with us for the past month and has been an absolute Godsend during these crazy times! We couldn't have managed without her! :-)
Monday, September 21, 2009
The talk we had with him was very candid and he helped us get a better understanding of what lies ahead for James. Lisa and I initially had the impression that James would likely have the surgery to reconnect his intestines in 8 to 12 weeks. After talking with Dr. Krishnaswami, we learned that the soonest he was likely to have the reconnection done is actually going to be closer to 6 months or possibly even longer. We also got a better understanding about how much intestine James actually lost and what he is battling against. Basically he only has about 50 cm worth of intestine. 20 cm comes from the stomach out to the stoma. This is a very small amount and this is the only amount that they have to work with when they introduce feedings to try to get him nutrition from another source other than his TPN from IV. James was very fortunate because he essentially has the bare minimum amount of intestines, and had there been any more damage he would not have had enough to introduce feedings whatsoever. This means that it will be a long road for him and they want to stretch out the time between reconnecting to give his body a chance to add some length his intestines. The hope would be that his body would continue to grow and add some length so that he can reduce the amount he needs from IV and increase the amount he gets from feedings. He will almost definitely need some relatively high level of nutrition and feeding from TPN from the IV for at least his first year of his life if not longer. A week from now, we will sit down with the doctors and a care team to get a better understanding of what all lies ahead for us. We'll get a better idea then as to if/when James would be able to come home during all of this. Also, please pray that his tissues would continue to get rid of all the excess fluid he is carrying (since the surgery he's gained over a pound of fluid, which is 1/3 of his body weight!). One complication he's having from this is that fluid is collecting in his tissues instead of his veins/arteries, so it's making it very hard for the nurses to find good veins. Last night they had to try 6 times to start an IV and those all failed, so they had to resort to placing an IV line in his scalp, which we were really hoping to avoid. Also pray that his open wound continues to heal (a long process) and that all infections are kept at bay. He can't afford for anything else to go wrong.
Today (Monday) is Madeline's ureter surgery. She goes in at around am, so I will try to send out an email later in the afternoon to let everyone know how things went. We'll be up at OHSU/Doernbecher with her and then shuttling ourselves between there and Emanuel to see James. Our lives will definitely revolve around hospitals this week!
Thank you all for your prayers for our children and our family. It is such a wonderful blessing to us to have so many people praying for our children and family's well being.
Keith and Lisa
Wednesday, September 16, 2009
The surgeons decided that there was too much of a risk of damaging some of James' remaining small intestine if they went in today and closed his incision. Instead they are opting to let the wound heal over on its own and once he is stronger and the swelling has subsided, they will look at the prospect of re-attaching the two pieces of small intestine and closing up the area. The soonest they would even begin to look at doing that is 8 weeks from now and likely further out than that. At first we thought this was a big setback for him, however, after a lot of discussions with the doctors, it really doesn't change much in the way of the short term issues for James, and in one respect, it will be good, because it is one less surgery his body has to endure at this point. Even had they closed the incision most of our next steps would have been the same, although he would have had to recover from it as well.
There are several things that will happen now. One issue for him now is that he is on IV fluids. The body can tolerate this for a period of time, however, if you aren't getting any food through the stomach and the small intestine for an extended period of time, bile starts to build up around the liver and begin to cause damage. The next big phase for James is to slowly get his body to heal (get off of the ventilator, make sure the PDA heart valve isn't causing issues, etc.) so that he can be at a point where they are able to slowly introduce feedings. There will be a several week phase in which they are slowly introducing small amounts to find out what the tipping point is for James in terms of food that his shortened small intestine can process. It will likely be a process where we take two steps forward and then a step back for several weeks before we are at a point where we have figured out what he is able to tolerate.
After all of that, they will start evaluating him to see if he is ready to have the two pieces of bowel reattached. We'll need to pray that his bowels are able to grow, even just a little between now and then, because they will need to remove a little bowel in order to get fresh tissue to reattach and he's already on the borderline of having enough bowel as it is. Once they finish that, we will have to start the process over to find the new threshold he is able to tolerate. Based on that, we will then be able to find out what the long term implications are for James. All of this is several months away. At this point it is a little uncertain as to whether or not James will be able to come home during any of this or if he will be in the NICU the entire time.
Overall it will be a long road ahead for James and all of us. On the positive side, he has definitely been making good progress since his surgery, and he is needing less platelets and almost down to not needing any oxygen from the ventilator. James is quite the fighter and with everyone's prayers and God's help I am sure he will come out of this fine in the end.
We don't really know very much more about the PDA at this point, but based on the discussions today, I am slightly less concerned about it than I was. Our hope would be that it is gradually closing on its own instead of needing surgery to close it, and we should find out if that is the case sometime toward the end of next week.
At this point I think the updates will become slightly less frequent, as I think the progress will be positive but slow from day to day. We appreciate all of your support and prayers. I'll also make sure we keep everyone updated on Madeline's progress as she goes through her surgery . Considering the amount of stress that has been heaped upon us all at once, I think we are holding up pretty well...thanks to your prayers!
Keith & Lisa
Monday, September 14, 2009
Overall there are a few specific areas for which we would appreciate your prayers:
1. Prayer that the doctors successfully removed all of the NEC-infected areas and that the continued antibiotic treatments remove any lingering infection
2. For James' continued healing and comfort/pain control and for his platelet count to begin to recover on its own
3. That the long term effects will be minimal and easy for James to manage
4. That the doctors will have wisdom about when to go ahead with another surgery to close the valve between his heart and lungs (probably within the next 2 weeks, when he is strong enough). That this valve will remain strong and not cause any complications either during surgical procedures or during his recovery periods. (One of the reasons he was so touch-and-go during his surgery was due to major fluctuations in this valve when he was under extreme stress, so he was alternating between sending too much blood to his lungs and not enough to the rest of the body, and then the reverse.)
I probably won't have another update until unless there is a dramatic change.
We sincerely appreciate the outpouring of support and prayers for James, Madeline and ourselves.
Keith and Lisa
Sunday, September 13, 2009
We got to meet with the surgeons and other doctors this morning. James made very good progress overnight. He is nearly back to where he was before the surgery for his statistics for breathing on the ventilator and he is peeing very well which will help him release the fluids in his body. It is also a very good sign for his kidneys, which is always a concern after these types of surgeries. The stoma and areas around the incisions all look exactly as they should. Directly after the surgery he was very unstable last night, and we were told that things were really to be looked at and judged on a minute by minute basis. Since then he has stabilized substantially and has had very positive progress.
Lisa mentioned in one of her emails what his surgery might involve, but here is a brief description overall of what they did. They went in and removed the dead area of the small intestine, which essentially ended up being a large section in the middle of the small intestines. The took the end that comes from the stomach and ran it outside the body (that part of the procedure is call an ) to a stoma. This allows the waste to leave his body while the rest of his intestines heal. At the other end of they put catheter so that they have a way to drain anything that may have been in the lower area. His incision was left open (it has a protective film and dressing on it, that gets changed out every few hours) to allow room for swelling which typically happens after theses surgery.
If he continues to do as well as he did overnight and his swelling goes down as it should, sometime in the middle of the week they will move the section with the catheter closer to the stoma and close up the incision. At some point much further in the future, they would then go back and reconnect the pieces together.
One of the things that complicated the surgery last night was that James has a PDA (patent ductus arteriosus.) All babies have vessel which connects the two main arteries in the body while they are in the womb as part of there normal blood circulation. After they are born this vessel closes. In premature or growth restricted babies it is not unusual for this vessel to stay open. The opening allows oxygen-rich blood from the aorta to mix with oxygen-poor blood from the pulmonary artery which can put strain on the heart and increase blood pressure in the lung arteries. This was causing his blood presure to fluctuate wildly during the operation and made the whole thing very touch and go. Our hope is that this is going to close on its own, which does happen with many of these cases. Sometimes the can give medications which cause it to close, however, those medications can case issues with the stomach, so James would not be able to take those medications, and would need surgery if it does not close on its own.
It is going to be a very tough next couple of weeks for James, so we would ask that everyone please keep him in their prayers. We have been very grateful for the outpouring of prayers and support we have recieved from everyone. Please keep Madeline in your prayers as well as she will have to go in for her surgery .
I will probably send slightly less frequent updates over the next few days unless there is a dramatic change, but take that as sign that things are progressing forward in a positive manner.
I held it together for brief moments off and on, but especially once we got to the hospital I was a basket case. The chaplain was at James' bedside and we laid hands on his head as she prayed a blessing over him. Then the whole team of doctors came to prep him and we followed as they rolled him down to the OR. That is a trip that no 2-week-old baby should have to take. We got to give him one last kiss before they wheeled him in and they began the surgery at 6:30pm.
Saturday @ 8:30pm:
James has made it out of surgery. They found a substantial amount of
his small intestine which had been destroyed by the NEC and were
forced to remove about 50-60% of his small intestine. Normal babies start
with a little over 200cm, but because of his growth restriction James
only started with about 100cm. Since they removed about half of that
he will essentially be down to a quarter of what a normal baby would
have. They have told us that this is enough for him to be able to be fed in some way, however there will be lots of things that will need to be done to manage it (they haven't even talked about those details yet, as it's a long way down the road). One good thing was that were able to clearly identify the bad areas, which is not always the case in these situations. We are very fortunate that the skilled surgeons decided to operate when they did, since James did not appear to be as sick on the outside as he really was on the inside. I think they were surprised to find just how much damage had already been done and, had they decided to wait much longer, the outcome could have been irreversable.
The more immediate concern is for his overall stability. He is still
extremely sick and his progress right now is really managed minute by
minute. Keith and I have been with him for a little while and he seems
to be stabilizing somewhat, although his heart rate is a little faster
than they would like. We are staying in the hospital tonight so we can
be here if anything changes, but right now he is progressing very well
considering the circumstances.
Sunday @ 10:00am:
James was a trooper through the night and the nurses and surgeons are happy with how he's holding up so far. His stats are stable and are a bit better than they thought he'd be at this point. He is very swollen over his whole body, which will likely get worse over the next few days before it gets better. He has an open wound across his abdomen (covered with a special film and then gauze/dressings to allow his bowels to expand if the pressure builds up in his abdomen. He'll need another shorter surgery, probably next week, to sew up this wound. He also has a tube in his colon leading to the outside and an ostomy (open area with a sterile plastic bag sealed over the top) on the other side of his abdomen which allows surgeons to see his intestines and how they are healing.
While all of this was not news we would have hoped for, Keith and I
thank the Lord for allowing him to make it through to this point and
that the surgeons were able to clearly identify the diseased areas and
remove them successfully. James is still in critical condition and we know this will be a very, very long haul for both him and us.
We continue to pray for him to stabilize and heal from his surgery and
that he will stay free of infection or other complications.
Thank you all for all of your prayers and support.
Saturday, September 12, 2009
I just got off of the phone and found one comforting piece of news. For his latest labs, James platelet levels have increased slightly. This means that he is starting to trend up, although he is still very low. They would like him to be above 100,000 at a minimum. So far today the labs trended 36,000, 47,000 and 57,000 at the latest one. He is still getting additional platelets, but hopefully his numbers will continue to increase which would likely remove him from needing surgery for the time being.
This morning James' tests showed that his had increased from 57,000 to 104,000. :-) This is good news although it will likely drop on the next tests, as they are not going giving him additional platelets this morning. This will help them determine how much he is starting to recover and build them on his own. Visually his belly looks about the same although it may be slightly less red than yesterday. The surgeons will still be monitoring him closely as he still may require surgery if the belly continues to stay swollen and firm.
I will send out another update later this evening.
Thank you for your continued prayers and support! They are helping!
Friday, September 11, 2009
Over the past few days James has made relatively steady progress in a lot of areas, but two things of concern have been that his belly is very firm and that he has need consistently needed additional platelets over the last few days. His platelet count has been well below 100,000, so twice a day he has been getting extra platelets. Normally this is somewhat expected as the platelets are used to help him fight off the infection. The concern now is that since he is now several days past the point when everything started, he should be getting to a point where he would not be needing them, or at least not as frequently. They have ordered another ultrasound of his belly for the surgeons to look at to try to determine if there has been a rupture in that area, or if it is simply inflamed. What they see on the ultrasound will determine the next steps which will be one of 3 things:
1. Continue what they have been doing
2.Take some sample from areas in his belly to see if it is firm from a rupture or simply from inflammation
3. Surgery to try to repair a rupture that shows up on the ultrasound
Among the many concerns with surgery is that the damage would be too severe to repair, or that he is not at a point where his body is strong enough to handle the surgery.
Please continue to pray for James, that he has not had a rupture, and that his bowels will continue to heal. One praise from yesterday is that the doctors decided since the blood culture they took last week has not grown any bacteria (indicating an infection in the blood), they did not do a spinal tap. We're so glad James was spared that!
Friday PM Update:
Tonight's ultrasound was reviewed by James' doctor and the surgeons and they determined that there aren't clear enough signs *right now* to indicate that he needs immediate surgery. However, they covered their bases by also saying that doesn't mean something might change in the next 6 or 12 or 24 hours which would push things over the line to then needing surgery. James' abdomen is still swollen and red and tender, which indicates that things are not working smoothly on the inside, but there's not a clear picture as to why. Most of his labs and vital signs look good, but the need for continuous platelets continues to be of concern. He is still one very sick little boy.
Of course, the gravest concern is what would be found if surgery is necessary...the possibilities of areas of the bowel being weakened from infection or constricted so tightly that nothing can get through, or areas of the bowel that may have died already and need to be cut out. If the tissue surrounding the cut out portion of intestine is healthy enough, they'd sew those two parts together and call it good. If the tissue is not healthy enough, they'd do something called an ostemy, where they make an incision on the outside of the abdomen and bring the two parts of the bowel up to the surface of the skin to heal more, then go back in later to re-attach them. You would think that with all the amazing advances in medical science and technology, including artificial limbs and hearts, that surely someone would have come up with a solution for damaged intestines by now! But apparently attempts at intestinal transplants with either human or man-made tissue have not been successful and it's really not an option.
Please pray for dramatic healing for James in these areas, especially over the next 24 hours as surgeons will be closely monitoring him and may be quickly deciding about possible surgery:
1. Softening of James' abdomen and reduction of fluid/swelling/infection in the abdomen.
2. Increased level of platelets that James is able to produce on his own and effective use of those platelets against infection, so that recurring doses of additional platelets are not as necessary.
3. Miraculous healing of the intestines and specifically the bowel wall, removal of any narrow spots or blockages in the intestines.
4. Physical signs of improvement in all areas, especially during the surgeon's exams, so that surgery is not necessary.
5. Strength and comfort for James, as I'm sure this whole ordeal is taking a huge toll on his fragile little body and spirit, and for Keith and me and our families during this draining, emotional roller-coaster.
6. That if surgery is necessary, angels would be watching over James' body and the surgeon's hands for a life-saving outcome with no long-term damaging effects.
We love you all! :-)
Wednesday, September 9, 2009
Keith and I spent all day yesterday at James' bedside and I stayed overnight at the hospital, just so I could be close in case anything happened. The doctors told us that the first 24 hours were the most critical and it looks like he has come through that period being relatively stable, which is a big praise. The acid levels in his blood have been slowly decreasing and his x-rays are not showing any signs of a hole in his bowels at this point. He is still suffering from a serious infection, but as of this morning the doctors were not seeing any signs that he'd need surgery (of course, this can change). He's on a ventilator and although this is more invasive, it's reassuring that his breathing is stable and he's getting the support he needs for his lungs (plus, now we're able to see his little head and face all the time!). He is on medication to raise his blood pressure, which will help encourage his body to get rid of excess fluid that's been building up in his tissues, and he has a catheter to help track his urine output. He's had multiple blood transfusions, along with extra platelets and plasma. He is on a morphine drip to help control his pain, which helps with any general discomfort and specifically with his bowels, in case the infection is destroying parts of his intestines. Today his vital signs are stable and they are focusing on finding the right balance of IV fluids going in (enough so that he's not dehydrated) vs enough fluid being expelled (so that his tissues are not retaining fluid).
The blood cultures they took on Monday night have yet to grow any bacteria and the x-rays are not yet showing a specific area where the infection has taken hold, so at this point the doctors aren't really sure what the infection is. In cases like this, they want to make sure the infection isn't spreading to other parts of the body, so tomorrow James will have a spinal tap (the thought makes me shudder) to check for meningitis. Please pray that the morphine will cover any pain he might experience during this procedure and that his spinal fluid will be clear of all infection, as meningitis is a life-threatening disease and he's already in a weakened state.
We have a long way to go before we're out of the woods, but I want to thank all the people across the country who have been praying faithfully for James and our family. It is such a comfort to know that even when Keith and I are too fragile to put our prayers into words, other Believers are lifting us and James up to cover us in prayer.
I wanted to share a prayer from someone in Ohio who emailed me...it really touched my heart:
Heavenly Father, thank you for this little miracle James.
Your Word tells us that before the foundations of the earth were even formed....You knew us....You knew our names and You even knew the very number of hairs on our heads.
Just thinking of that truth gives us strength and comfort to know without a doubt that You are completely aware of little James.
You have known him since before time......that said, I ask you Father to heal his body. I pray that You will send Your to James, to strengthen him, to comfort him, to heal him.
I pray for wisdom in his treatment, and I pray for his comfort, take away any pain.
The organs in this little body were hand crafted by You Father, fitted together perfectly to sustain life. I pray that you will cause all infirmity, infection, radical cell, abnormal cell, to shrivel and die and to be eliminated from this little body naturally by the power of Your Holy Spirit and in the name of Your Son Yeshua.....
I pray that every healthy cell will become super charged to take over where ever needed to bring health and healing in James.
I lift up this family that are so concerned for their newest member, give them comfort and peace to know that You are a loving Father and that You do exactly for us what we would do for ourselves if we could see all things as You do.
I pray it all in the name of Yeshua.....amen
I do not have email access at the hospital and have only been home for a few hours at a time, but I'll try to update this blog as I have the chance and I promise to post pictures soon! :-)
James was born last Monday, kicking and screaming with his eyes wide open, weighing in at 3 pounds 3 ounces and 15 inches long and we were thrilled! The doctors had estimated that he'd only weigh about 2 pounds 9 ounces, so to hear that he was over 3 pounds felt like a miracle! He's a handsome little guy who has tons of brown hair and looks a lot like his daddy. :-)
He's been in the NICU and had been progressing steadily, even breathing without any assistance for up to six hours, until Monday night when things took a bad turn. While Keith and I were visiting James last night his heart rate spiked up to 320! (I didn't even know it was possible to go that high!) They got his heart rate back down to 180, but he started showing other signs of being very sick. Overnight and the next morning they have done some tests. He definitely has a serious infection at this point (most likely in his intestines but it could also be in some other area of the body) and all of the signs are pointing to him having necrotizing enterocolitis (NEC.) Some of the signs of NEC are: 1) a drop in his blood platelet level (that's stable since last night), 2) build up of acid in the blood (his has been increasing), 3) not tolerating regular feedings, 4) swelling of the bowels, and 5) . They are doing several things to treat him and monitor him very closely at this point. He is on a ventilator (tube down his throat) to help him breathe, is on triple antibiotics to cover just about any infection, he had a this morning since he's been losing blood in his stools, he has an IV line in his belly button for administering fluids, and they'll be doing frequent blood tests and x-rays of his abdomen to check for further/developing problems. He will be getting and they will suspend feedings for at least the next few days and possibly up to 10-14 days.
Since James was growth restricted in the womb, his body was sending more blood to the vital organs (brain and heart) as he grew, which means that other organs didn't get enough blood flow to develop properly/strongly, so he was at an increased risk for an infection of this kind. The doctors said they'll be checking x-rays for "free air" in his abdomen, meaning that there could be a hole in his intestines leaking air and this would need emergency surgery. Intestinal infections can get very bad, very quickly. If they discovered during the surgery that too much of his intestines had been damaged or the tissue had already died, he would not be able to digest food and he would not survive. Just the thought of that overwhelms me.
Keith and I are heading down to the hospital and will be keeping a bedside vigil. Please pray with all your heart and soul for James--he needs as many prayer warriors as he can get! Pray that he will respond well to the treatments he is on, and that his intestines will be whole and functional. Also pray for Keith and I so we can try to stay calm and provide the emotional support James needs right now. Pray that the Lord would bring us comfort and shield our minds (especially mine, since I'm the constant worrier) from thinking of all the horrible scenarios and things that could go wrong--we'll need some Divine intervention to stay positive through this. Also pray for emotional support for our families and Keith's mom Darlene, who is being a great blessing to us in taking care of Maddie.