Arrangements

Arrangements have been made for Benjamin's funeral. The visitation will be held tomorrow, Monday, June 1, from 5-8 pm at Bopp Chapel. The address is 10610 Manchester Road Kirkwood, MO. The funeral Mass is at Mary Queen of Peace at 10 am on June 2.

The last few days have been a blur. After Greg and I arrived at the hospital on Friday, the CICU doctor was waiting for us. We had already seen all of Ben's labs. His creatinine had risen, as had his bilirubin. His urine output had fallen off overnight. His blood counts, his hemoglobin and platelets, had fallen again. He had a slight temperature, and his infection counts were high. We spoke to the doctor at length, and as I mentioned, we had decided to make him a DNR. We also agreed that if one more organ system became affected, there would be no way his poor little body could heal. And the reality was, the likelihood of his kidneys and liver getting better with the way his heart was failing was very small. But, I was still holding out hope that he would look better by the next morning.

As the day moved on, though, it became more and more obvious that he was getting worse. I called my family to come and see him, and I asked if we could hold him. Greg and I spent a lot of the afternoon just snuggling with him. He was so peaceful. They had increased his pain meds, and he was no longer struggling to keep up his sats. His blood pressure and pulse were getting lower, and his heart had started to skip some beats. Still, I had not given up hope. But then he began suffering from internal bleeding. We were devastated. We knew what this meant.

We stayed in the room with him all night. He slept comfortably. We did not. At 4 am the nurses woke us to let us know that his blood pressure was even lower. His am labs came back, and his hemoglobin and platelets had fallen even lower, making it obvious that his bleeding was getting worse. Dr. Gazit, the CICU physician from the week before, came in to speak with us. This man was so caring, and he had given me such hope the week before, telling me that he had not given up on Benjamin. He was the one who made me believe that there was a chance that his kidneys and liver could recover. But when he came in, it was obvious to him, and to Greg and I, that there was nothing else that we could do. In fact, at this point continuing treatment would just prolong Benjamin's discomfort. We made the difficult decision to let him go.

We continued with comfort measures, and he never was in pain. Either Greg or I held him for the next eight hours, after everyone in our family came in to say goodbye. I dressed him in one of the few outfits that I had bought for him. I was scared before he was born to buy anything, because I was scared that he would never come home. But I had one sleeper that fit him perfectly. I wrapped him in his blanket, and we enjoyed holding him close. After he passed, and we were spent our time alone with Ben, Dr. Gazit came and prayed over him. What a wonderful doctor and person. We were so glad that he was there.

For five weeks I have spent every moment at that hospital, either in person or in thought. The CICU is a surreal place. Behind those doors is an alternate universe. Three children died there in the past week - Drew, Ben and a sweet two year old named Elijah who spent his life also battling hypoplastic left heart. The grandmother of Drew and I spoke of this at Drew's funeral. When you are living this, it is hard to be outside of the doors of the CICU, to see everyone else living life so normal, without this pain. I am not sure what I am going to do after the funeral. As I said, every waking moment has been spent trying to save Ben. Now all I can think about is that he is gone, and that I will never get to see the wonderful boy that he was going to be. The pain is unbareable.

I want to thank everyone who has been following this blog, for all of your prayers and support. The gifts, the e-mails and comments, those who came to pray over Ben, words cannot express our appreciation. I know how much everyone cares, and how everyone wanted just as much as we did, for Ben's journey to end differently.

I never ever, not even the last day, believed that this would happen. When on December 19th we learned of Ben's heart condition, I had to believe that he would be OK. These last six months have been very difficult, to be pregnant with a child that you don't know will survive, to deliver babies for a living, to be a doctor and know too much about what elevated creatinine levels mean. But, to be a mother is about being there and loving your child no matter what, to have hope, and provide comfort. I think I did this.

Benjamin Gregory Ward

Ben passed away at 2:09 pm. Greg and I were with him the entire time, and he left this world very peacefully. This is the hardest thing, but the most important thing, that I have done in my life. We will never be the same.

We will update tomorrow when we have the specifics of the visitation. Thank you for your continued prayers and support.

Sad News

Ben is not doing well today. His labs got worse overnight. His kidney tests rose a little bit, as did his liver tests, suggesting that again these organs are not getting enough blood supply. He is again anemic, and his infection count rose. He had a slight temperature last night, but today his body temperature is too low. They are going to give him a blood transfusion, and check some more cultures. His heart rate and blood pressure are down a little today as well.

We have decided to make him a DNR, which means that if he arrests again, we would let him go. Otherwise, we will continue with all other present medications. They are going to tweak some of his kidney medicines to see if they can get any more fluid off of him. If his labs get worse again, Greg and I will have to make some decisions about some of the meds. There is really nothing else that we can give him or do to make his heart work any better.

My family has all come up today - my Mom and Dad, sister Laura and brother in law Tim. They are going to let me hold him later, after his temperature comes up a little, and they get his blood going. He is much more comfortable today, as they added some more medicines to relax him. We are trying to decide when to bring the girls up to see him. They are at the Magic House this morning with the babysitter, so we think we will wait until tomorrow. We'll see how he is later today.

I will update again later today if anything changes. Please pray for Ben, that he remains comfortable, and that Greg and I are strong enough to make the right decisions for him.

You'd Cry Too If It Happened To You

Ben has been much more awake today, which is not necessarily a good thing! He tends to get himself pretty worked up when he is awake and drops his O2 levels. Who can blame him? He's swollen everywhere, he's got all kinds of tubes and lines, and his mom can't hold him. You'd cry too! He looks like Sophie when he cries, without the noise. Of course, if he is anything like Sophie, we should bring in the hairdryer to soothe him - that might help more than the narcotics.

Labs are all stable today. No changes in any of the levels. His electrolytes are less unstable, and his urine output stays good. He didn't gain any more weight, so this is positive as well. The kidney doctor says that she is not discouraged that his creatinine levels have not dropped further; she says that she is happy that it hasn't risen. That made me feel better. His bilirubin also did not increase, so I am pleased with this as well.

The CICU doctor says to look at the big picture and at periods of time, rather than daily changes. It is a slow recovery process. I am trying to do this, and not to look so closely at the labs each day. I have never been the most patient person in the world, so I'd rather see big and fast changes. But for now, I'll take any positive news at all!

They Call Me Mellow Yellow

As I said yesterday, every day brings a new worry. Their new concern is the liver, and the fact that his bilirubin (which causes his yellow skin) continues to rise. Whereas last week they told us that it could take weeks to get better and this was not a concern, today they tell us different. They are now worried that there is permanent damage to the part of the liver that excretes the bilirubin (the biliary tree) and that overtime this will cause him to go into true liver failure. Again, if this is the case, he cannot get a heart. Before they had told us that his liver dysfunction would improve with a new heart, and we were only fixated on the kidney function. More to worry about.

His labs look the same as yesterday. The kidney tests did not change. His bilirubin did not go up - it stayed at around 30. This is the first day that it did not rise, so hopefully that is a good sign. He has so many strikes against him; it is hard to remain optimistic that all these systems can recover. I really am trying though.

I used the flash on this picture, so that everyone could see his true color! He is a little banana. He actually does not look any yellower today than the past few days, I was just being kind to him in the photos by turning off the flash. His weight went down by about 100 grams. Not a lot, but at least he didn't gain anymore. There is no more room in his little swollen body for any more fluid!

Ups and Downs

I spent the night again last night - I feel better when I am here. He had a good night, and his urine output has continued to increase. His creatinine also improved slightly, to 1.7. He is still retaining a lot of fluid, though, and his weight is up by almost 2 pounds in the past five days. And I don't think that is because of the 15 oz of breast milk that he was getting.

Today he is dropping his O2 levels more than in the past few days. They have had to increase his oxygen level on the ventilator. If he stays calm and sleeps, he does OK, but any stimulation drops his levels. He just doesn't have any reserves. They have increased his fentanyl drip trying to keep him more sedated, and right now he seems more comfortable again.

Every day brings a new worry. One day I am excited about his seemingly improving kidney function, and the next I am worried about his difficulty keeping up his O2 levels. It is so very stressful. I am just so worried that they won't be able to keep him stable enough with all this extra fluid in his body to make it until his kidneys really start working again. Hopefully, tonight will be calmer.

If anybody is interested, and I know there are a few photographers and creative people out there following this blog, my sister created a link at the top of the blog to send in photos for Ben. Essentially she is collecting a gallery of prayers, thoughts, and support for Ben. If interested, follow the link or go to her blog (Boeker Family Blog) and e-mail her some creative photos. If you're not so good at those things (like me!) then feel free to view it and see all the pics that friends and family have sent, and say a little prayer for Benjamin!

Happy Memorial Day

Ben says that he'd rather be BBQing with Uncle Tim, but at least they restarted his feeds!

He's actually had a pretty good day. His creatinine fell again, now down to 1.8. He received another blood transfusion, and they stopped most of his antibiotics. They kept him on one to cover the bacteria in the ventilator tube. They restarted his breast milk feeds through his NG, as they are no longer worried about his bowels. His electrolytes seem to be much more stable; they have only had to replace his potassium, and his sodium level has been holding steady. Best of all, his urine output has increased over the last two days. Both days he has made 100 cc more than the previous days. We are very encouraged by all of these trends, and hope that it signifies improving kidney function!

He is still very jaundiced and is still retaining a lot of fluid, mostly in his abdomen and lower extremeties (feet). He looks very comfortable. Sometimes, though, you can tell he is trying to cry, but since he is on the ventilator, no cry comes out. Poor little fellow. He looks like Sophie when he tries to cry - uh oh!

Yay for Yellow Urine!

(Greg posting) Ben did OK overnight. He had some drops in his oxygen levels and they have again stopped his feeds. The surgeons saw him and feel that his bowels are ok and no NEC currently. Just to be safe though they are going to keep him NPO (stop his feeds) for the next 48 hours. He has had a drop in his platelet count and his hemoglobin. The ICU attending is not sure if this is real or not. They did start him on some antibiotics just to be safe becuase an infection could cause the drop in his platelet count.

The kidneys are holding steady. His creatinine remains at 1.9 but his urine volume is increasing. The kidney doctor came by and continues to be encouraged by his urine output and the nice yellow color. His electrolytes have been more stable. Good news thus far. They are going to give him some albumin today (a protein) which may help pull some fluid back out of his skin and into the blood vessels. Then he will get another diuretic to pee that extra fluid off. Hopefully he will have a good response because he is so puffy. He continues to have a nice golden tan...not surprising since I tan so well. For those who don't know me, I am very pigmentally challenged and usually get a sunburn if I even think about the sun.

I would like to thank everyone for praying for Ben. Also, a special thank you to all our family and friends who have helped watch the girls, cook, cut grass, and be there so Karen and I can maximize our time with Ben. It is very appreciated.

Trying Not To Get Too Excited

Ben's kidney tests look better again today! I am trying to not get too excited, because it has a long way to go, but his creatinine fell to 1.9 ; yesterday it was 2.4, 2.6 at its highest. They continue to chase after his electrolytes, so it is obvious the kidneys are still not functioning properly, but I'll take any bit of hopeful news at this point.

Benjamin continues to be quite yellow - his jaundice has definitely not improved! He really does look less edematous (puffy) to me today. His face looks more like himself again. He continues to make adequate urine, although he definitely needs to pee out a lot more water. As I mentioned, his electrolytes, especially his potassium and phosphorus, are still abnormal. They are working to keep them in a normal range through replacement therapy, and oral medicines to reduce the absorption of the ones that are too high. He looks very comfortable, sleeping most of the time, although he will occasionally open his eyes and look around. I think he likes his new blanket!

So not too much will change today as far as his treatment. They will just continue to monitor his labs closely, keeping him as stable as possible, and hopefully we will see the creatinine improve again tomorrow.

Ben's Blanket Is Finished

I stayed up past midnight finishing Ben's blanket. Brett the RN and I re-made his bed this am and he is now cozy on his new blankie!

Ben had some slight drops in his O2 sats last night when they would need to suction him or move him around. They checked his sputum for any signs of infection but it looks negative. His creatinine (the important kidney marker) improved slightly from 2.6 to 2.4. I am optimistic about this change. The kidney doctor says she'll be optimistic if she sees the trend continue tomorrow. His electrolytes - sodium, potassium, magnesium, and phosphorus - are all out of wack secondary to his kidney failure, so they work to replace those. They would only do dialysis if he started to have worsening respiratory function due to the extra fluid, or high potassium levels.

Greg and I think he looks less puffy today. He is still jaundiced, but the liver docs say this could take weeks to correct. He looks very comfortable, as long as you don't mess with him much. And he is enjoying his lullabies and his new blankie.

This Place Is So Sad

The little boy Drew, two doors down from us, just died. I had come to know his parents well. They were here everyday and had been here since 3 weeks before Ben was born. He too had HLHS, and severe lung disease. His mom had never even got to hold him. Before they turned off his life support, they asked if they could donate their son's kidneys to Ben. Please pray for this family. Even when they were in so much pain, they were thinking of us. What good people. The nurse said that Mom got to finally hold her son.

Upon Further Review. . .

The last few days have been an emotional rollercoaster. The CICU staff say that this is very common here. Really good days, really, really bad days, and a few inbetween. The last two days have been pretty bad.

It started on Tuesday when the fellow told me that the kidney doc wanted to talk to me about the kidney ultrasound. We had already talked to her about the ultrasound, and her opinion about the kidney function the day prior. Remember my blog update on Monday? By 5 pm she still wasn't here, and they asked if my husband would be arriving soon. I knew that was not a good sign. Greg was unfortunately at work, but my parents arrived. The doctor finally came around 6:30. She told us that she had reviewed the ultrasound images of the kidney. I can assume that she only had a verbal report the day prior. She said that the kidneys looked very bad on the ultrasound, and that she believes that they most likely have some permanent damage. This is in contrast to the opinion that she had the day before when she believed that the process with the kidney was just temporary. All we can do at present is wait and see what happens with his lab numbers. He cannot receive a heart if he is in kidney failure. A new heart cannot fix this.

Ben is also showing signs of liver dysfunction. His bilirubin continues to rise, and some of his other liver parameters are abnormal. The liver team was just here, though, and they believe that this is a mild degree of liver dysfunction, and nothing that would keep him from getting a new heart. A new heart would indeed correct his liver problems.

So we are now in a very difficult holding pattern. There is nothing more to do than to wait and watch for any signs of kidney improvement. He does continue to make urine, but his lab levels look the same - again, no better, no worse. His creatinine is holding stable at 2.6. He cannot receive a heart unless it returns down to 1. The reason for this is because if his kidneys are permanently damaged, they will eventually fail. The mortality for a heart transplant with chronic renal failure is close to 90%, and even if he were to survive, the surgery is further harmful to his kidneys. They can do dialysis on infants, although it is very difficult, but they cannot transplant kidneys.

Bottom line - if his kidney function does not improve, he cannot get a new heart, and there is nothing more that we can do. I will continue to pray that the doctors are wrong, sometimes we are, and that his kidneys will get better. I am, though, at peace knowing that we have done everything possible for him. In the meantime, I will simply stay here with Ben so that he knows I am here, finish his blanket today so that he can enjoy it, and pray. Please pray for Ben as well.

If anything changes today, I will update later after I talk to the doctors on rounds at 5 pm. Thank you to everyone for your help and all of your support, thoughts, and prayers.

Strong Little Guy

Today, Greg had to work, so it has been just Ben and me. He's had a relatively quiet day (knock on wood). They did have to slow down his feeds through his NG tube because he was getting distended (too much gas) and spitting up alot. This would cause him to drop his O2 levels. Xray of his belly showed no obstruction or any other worrisome findings. Now he is resting comfortably. I did get to change a few poopy diapers today!

His kidney tests again have not changed - no better, but no worse. His liver enzymes continue to improve, although he remains jaundiced. He is still making urine, so this is also good. He did get more of my mom's blood donation today, as he was slightly anemic. I'm sure this has nothing to do with the amount of blood they take from him every day for labs!

I took this picture when he was awake earlier this afternoon. He was looking at me, looking around, and just holding my finger. I had put on a lullaby CD for him that Debbie from L&D had given him. I think he liked it!

I've Had Faith, Now I Have Some Hope

It has been a difficult day for me. I know just enough, or rather, remember just enough, to cause myself panic. I heard the test numbers this am and started to prepare myself for the worse. I think that I am behaving more like a fearful mother, rather than a doctor.

First, we spoke with the critical care attending about Ben's condition. He again reiterated that he believes that the kidney/liver failure is due to an acute event, that he is making urine, and that is hemodynamically stable (his vital signs look good). He believes that he will recover from this, and that he looks better clinically.

Next, the kidney attending came to see Benjamin. She, too, feels that this is an acute event, and that his kidneys will recover. She doesn't know how long it will take, and told me that his creatinine could still continue to go up, so not to panic if it does (does she know me that well?). She says that right now he is nowhere near needing dialysis. His potassium is not elevated (actually it has been low) and she says that he really isn't that puffy. I think that's all relative to being his doctor versus his mother, but I'll take the positive assesment! And the best news of all - she said that this should not deter him from accepting a heart now!!! She will let the transplant team know that recommendation. Let the prayers for the new heart to come ASAP resume and get even louder.

The best thing of all is that I again have some hope. It is a very helpless feeling, as both a mother and as a doctor, to know that there is nothing that you can do to help. We can only wait, and pray that his body gets stronger, and that he remains well enough to undergo surgery. Earlier today I had very little hope and was getting very scared that we didn't have much time left with Ben. I feel so much better now, and I am going to really try to remain positive, and think only the best thoughts for the future!

Time For Knitting

Not too much new to report. Kidney and liver function tests are about the same - no improvement per se. He does continue to have good urine output, so I remain positive about that sign. They are going to have the pediatric kidney specialists see him today, and they have also ordered a kidney ultrasound. Hopefully they will have some positive input. They have increased his feeds, and will attempt to minimize his ventilator settings. It is doubtful that they will make any effort to get him off the vent, because with his kidney function not doing well, he needs the support of the ventilator.

Since I cannot hold him, I am using my time to try to finish his blanket that I started once I found out he was a boy, way back in December. I was always so tired after work and getting the kids down, especially near the end of pregnancy, that I didn't get it done before he was born. Of course, neither of the girls had theirs then either. I finished Meg's when she was one! But, I'd really like to be able to use it for him right now, so I am knitting as fast as I can, and hopefully can get it done in the next day or so.

I will update later today if we have any more info from the kidney doctors. Please pray for Ben, that his heart can continue to stay strong enough to help his kidneys heal, and to stay strong enough to wait for a donor heart.

We Love Our Tan Puffball

Greg and I spent most of the day and night here at the hospital with Benjamin. I slept on a pull out cot amidst all his numerous alarms, and Greg got to sleep in the family lounge amidst all the cell phone conversations . . . neither of us slept that well as you can imagine! But, Benjamin had a stable evening. He is definitely making more urine, averaging around 10 ml/hour. They now have him on a scheduled IV diuretic (Bumex) which really seems to be helping with his urine output. Everytime I look at his catheter bag he's got more pee! His Xray this am did show a slight increase in the pulmonary edema (a little more fluid in his lungs), so they are going to limit his total IV fluids.

His labs this am show that his liver enzyme levels have improved (AST & ALT both decreased from the 400's to the 150's). His bilirubin level remains elevated, hence his nice tan. BUN has also slightly dereased (60-53), but his creatinine remains high at 2.3. From my recollection of ATN, the lab values lag behind the clinical improvement of increased urine output, so I do not think that it is surprising that it hasn't improved yet.

I think he looks better - less swollen and less jaundiced. See what you think by the photos. I also included a picture of some of his pumps, and his ventilator, so that you can see everything that he has going right now. He currently is intubated; that is the bigger tube in his mouth. He has an NG in his nose for feeding. The monitor on his forehead measures O2 levels in his brain. He has another one on his back for his kidney. He continues to have the two PICC lines in his arms, only one of them being centrally placed. He also now has an arterial line for blood draws and monitoing - this is in his femoral artery (groin). Last, but not least to poor Ben, is the foley catheter . . . OUCH!

They do also plan on restarting his feeds today, again at a very slow rate, as they do not feel that any of his new problems are related to his bowels. Maybe he'll start pooping again. It's weird not to be changing any diapers!

Uneventful Night, But Drama In The AM!

Overnight, Benjamin did well. They kept his O2 sats, blood pressure, and other vitals very stable on the ventilator. After his code, he had only made 6 ml of urine in over 6 hours. They want at minimum for him to make about 4 ml per hour. They had to put a foley in, and they had to get a urology resident to place it. For all of you OB's out there, do you remember in residency how much you loved that consult at 2 am? Anyway, over the evening, his urine output started to increase, and he was making at least the minimum.

Then, the excitement started. Xray came around 5 am to get another Xray of his belly. While they were manipulating him, something happened, and his O2 sats dropped, his heart rate dropped, and they had to extubate him. The doctor thinks he had a mucous plug in his tube. We think (as does the CT surgeon) that the tube probably moved during the manipulation. Either way, it was very scary. They have since reintubated him, and his labs again have improved. Immediately after the event, everything had looked worse again. But now he is back to stable.

Most likely he is presently suffering from what is called acute tubular necrosis; basically kidney failure. Hopefully it is an acute event, a combination of the low perfusion caused by his failing heart, and antibiotics he had to receive after the NEC last week. They are hopeful that if this is the case, this acute event is reversible, his kidneys will improve, and he will then stabilize. While his kidney function is abnormal, he could not undergo surgery, so again the transplant is on hold until he improves. This is so very discouraging, as a new heart is really the only thing that can help him, and all these set backs eliminates the only medical option. I am not used to dealing with issues that are not fixable - it is a very helpless feeling.

We will keep everyone updated as things evolve. Please pray that he continues to remain stable and that his kidney function improves.

On The Ventilator

Benjamin is stable at present. He is comfortable after his intubation, and is presently still sedated from the muscle relaxers, etc. . . that they gave him during his intubation and while they were placing an arterial IV. They were unable to place the other central line and will attempt to do that later. Presently, he is receiving a blood transfusion as he was slightly anemic, so the blood that my mother direct donated last week is being put to good use. They will continue to check his labs and monitor his kidney function throughout the night.

His heart remains in a normal rhythm, his blood pressure and the remainder of his vitals also look good. They will basically leave him alone for the next 24 hours, and hope that the mechanical ventilation will allow his heart to rest, and his condition to improve. The doctors seem happy with his present condition, and hopeful that he will improve. We pray for the same.

Prayers

Benjamin has taken a sudden turn for the worse, and your prayers are desperately needed.

This morning, the nurse noted that he was breathing a little faster. They checked some labs, and found that his kidney function and liver function tests were abnormal. (BUN of 60, Cr of 2.2). They are not sure if he has an infection, or if this is due to heart failure, and they decided to intubate him. While Greg and I were holding him prior to them intubating him, he went into ventricular fibrillation, i.e. he coded. They had to defibrillate him, and they did chest compressions for less than two minutes. He required no other medications. He is now intubated and stable. They are going to place two central lines to help monitor him better.

A nurse just came to get us so that we can talk to one of the doctors. I will post updates as I have them. Please pray for Benjamin.

Ben's Gallery

(This is Laura posting!)

Some of you who visit the Wards blog might also visit the Boeker Family blog, but if you don't, please jump on over to check out Ben's Gallery. We'd be honored to have you visit and contribute to Ben's Gallery as we continue to pray for our sweet little guy!!!

I Can Hear You

Ben has had a great couple of days. His O2 levels have remained stable, with very few drops, even when Greg is holding him. He continues to sleep all the time, and the few times he is awake, he is so content. I have never seen such a thing! All the nurses say he is such a good baby - I had assumed it was just because of his heart condition. He is up to a whopping 7ml/hour of breast milk, which is approximately 6 oz a day. (Anyone who doesn't want to read about breast pumping, skip to the next paragraph!) I am making enough milk a day, over 60 ounces, to feed the entire CICU, so hopefully he will continue to tolerate the feeds. A wonderful dilemma to have, considering it can be difficult to maintain a good supply with pumping alone, and was one of my worries prenatally!

He had a hearing screen today which he passed. Unfortunately, his newborn screen, which tests for alot of different inherited diseases, had some conflicting (most likely false positive) results concerning his cystic fibrosis status. So he now gets to undergo what is called a "sweat test" as the definitive test. I thought they would just crank up the heat in his room like a sauna, but it turns out they have more sophisticated means to make him sweat. Poor guy. The CICU doctor and the transplant coordinator assure us that this does not affect his ability to be listed or to receive a heart while we wait for the results. That was really our only concern.

We had to meet with a psychologist yesterday as part of the transplant process. They told us it was routine. We think it was ordered after they discovered that we had three children within almost three years! We are still awaiting the results of the evaluation. (Just kidding!)

So otherwise, everything remains the same. We continue to stay with Ben during the day, and the girls at night. Greg has returned to working after not having any shifts for the last two weeks, and I am still on maternity leave for now. I am going to have to unfortunately start to figure out what to do with work, considering we have no idea when his surgery will be. Making future plans is extremely difficult when you don't know what the future holds.

Breathing Better

Ben did well overnight. They have decided to give him Lasix (water pill) every day now to try and take off some excess fluid. He was starting to look like the Michelin Man. This has seemed to help. His heart rate has dropped from the 170s to the 150s and his breathing has been better. Not as many desaturations. He continues on the extra oxygen. They are humidifying it and when we go to move him some of the water runs into his nose. Poor kid - nothing like getting water-boarded by your own parents!

Sophie and Meg are doing ok. Yesterday Sophie handed me her stuffed animal. She told me his name was Ben and he was home from the hospital. The doctors had fixed his heart - pretty insightful little girl. Meg on the other hand is running around our torn up house and looking for Joe - the foreman of the construction crew. She is starting to put 3-4 words together and ask things like: "Where Joe go?"

Two Weeks Old!

Benjamin is two weeks old today already! Where has the time gone? Greg and I are starting to get a little antsy as more time goes by, hoping that a heart comes sooner rather than later. Especially as Ben starts having a little more trouble keeeping up his O2 sats.

His weekend was for the most part, stable. They restarted his feedings at a very slow rate, given his history of necrotizing enterocolitis (NEC). He seems to be tolerating the feeds OK, and his Xrays have show no signs of any bowel problems. I spoke to the doctor about the risk of the NEC returning considering his heart perfusion has not improved. He stated that the benefit of oral feedings prior to heart transplantation surgery far outweighs the small risk of the NEC returning. So I feel a little better about it, although still worried. They started him on O2 yesterday because he kept dropping his O2 levels, and forgetting to breathe. This has seemed to help somewhat, and his levels remain a little more stable today. They also gave him some Lasix yesterday, which is a diuretic (water "pill"), because his feet were getting puffy and they thought that maybe some degree of fluid overload was contributing to his labile O2 levels. Today his feet look better, so maybe the Lasix helped.

Ben had a repeat echocardiogram on Friday, which again showed that his right ventricular function remains subobtimal. Not necessarily worse, but no improvement. This is not surprising, but again confirms that transplant is his only option. Please pray that a new heart arrives soon. I must say that I am getting a little more worried about him hanging in there as more time goes by, but we obviously have no control over any of it! Which for two physicians and control freaks is a little challenging.

First Bath

Well, sort of. I washed his hair while he was still in his bed with all his wires and tubes. And I thought bathing Sophie and Meg while they were squirmy newborns was challenging! He didn't mind, though. Not a peep, and then he was awake while I held him for nearly an hour. Again, not a peep. He was so content to just suck on his pacifier and look around. Is this really his temperament? Did one of my kiddos finally get Greg's laid back personality, or is he just waiting until we take him home to let it all out?!? I guess we will have to wait and see.

From a medical standpoint, nothing new really. Which is always good - the surprises never are. He has one day left on his antibiotics, and they have disconnected the suction on the NG tube which makes moving him easier. I sure hope he doesn't have to go home with one of those things! His chromosomes came back 46XY - a normal boy. There are some rare chromosomal deletions that can be associated with heart defects, so although our index of suspicion was low, it is still comforting to have them back normal. His O2 stats have been normal all day, probably because Greg is too scared to hold him!

Happy Mother's Day to everyone!

Look how clean I am - and I smell like a baby, too!

No News is Not Bad News

Not much new to report the last 2 days. Ben has been relatively stable. His NEC is resolving. He remains in the Cardiac ICU and we are basically just hanging out and waiting for a heart. He does well until I try and hold him. Then he drops his oxygen level a little and we have to wake him up. I guess I am too comfortable for him. He is is starting to suck more on his pacifier. We will send updates every few days as long as he is stable. Continue to pray he gets a heart soon.

Another PICC Line

Today Benjamin got another PICC line, this one in his right arm. At least they didn't have to put it in his head like they had told us. He does, however, have an IV in his head right now (you can see that in the picture) but that should come out in a few days. By having the other PICC line, they won't have to restart IV's every few days.


Otherwise, he is doing well. No further drops in his O2 levels, and his abdominal Xrays and labs continue to look normal. They feel his bowels are on the mend. He is a little jaundiced, as all my kiddos have been, but not so bad to need bili lights (i.e. tanning bed for babies). He continues to just sleep basically all the time, but he seems so content, we hate to disturb him. We do hold him when he is not dropping his O2 stats, but otherwise he lies peacefully in his bed.

Doing Better - But No More Milk

Benjamin had a much quieter evening, with very few drops in his O2 levels. His repeat Xrays of his abdomen look better, and the doctors feel as if they caught the necrotizing enterocolitis at a very early stage. He will remain on 3 different antibiotics for the week, and he will most likely remain NPO (nothing by mouth) until after surgery. They will feed him through his IV, with what is called TPN.

Since he does have at present this bowel issue, he would not be a candidate for a transplant until most likely mid week. Luckily, the probability of a heart coming so fast is extremely unlikely. He does not get taken off the transplant list, so he is still acruing days, which is very important for moving up in priority. They also added an additional heart medication to improve his perfusion. This episode with the bowel just further reinforces how poorly his right ventricle is performing, and illustrates that he would not have done well with the Norwood.

The next 24 hours are the most critical for his bowels, but the staff feel confident that he is improving. They will, however, continue to watch him closely with Xrays every 8 hours, and labs again in the am. They will also most likely place another PICC line, this one most likely in his head, so that they can balance out all of his meds. Poor little guy. He really is very peaceful and content until they start messing with him, or changing his diaper!

I'd Rather Sleep Than Eat!

Karen and I arrived this a.m. to learn that Ben was moving back to the CICU. He was in a step-down unit yesterday. Turns out that overnight Ben had some decreases in his heart rate which caused a decrease in his oxygen saturation. They want to keep a closer eye on him so back to his original room in the CICU.

They also have made him NPO once again. He did not tolerate the feeding too well. An x-ray of his abdomen today showed early signs of NEC (necrotizing enterocolitis). This is a bowel condition seen more commonly in premature infants. Ben is susceptible to it because of the poor perfusion (blood flow) to his bowel due to his bad heart. The treatment will be bowel rest, nasal-gastric tube suctioning and antibiotics.

The unofficial result of his repeat echocardiogram from 5/1 was essentially unchanged. He continues to have not quite normal heart function. Therefore, it is looking more and more likely that a transplant will be the way to go.

Thanks for all thoughts and prayers. Despite everything, he looks great, and we will just keep hanging out in his room. He seems to enjoy listening/watching the Cardinals games.

First Bottle

Real quick update...Ben is doing well. He had a PICC line placed yesterday which is a more permanent IV. It can stay in for months so he won't have to get stuck all the time for labs and medicine, etc. He had a repeat echocardiogram this morning but we haven't heard the results yet.

He is a good pooper and makes many dirty diapers...I am going to have to teach Sophie how to change them. They decided to let him try and eat from a bottle today. He took a little bit from it. Karen is going to try again later when hopefully he is more hungry.