April 20, 2006

Nanette and Silas Update from Jeannie:

Today was Nanette's big day. Her vitals were stable so they went ahead at 2:00 this afternoon to do her surgery. They were hoping it would take four hours but were counting on five. They did it laproscopically to avoid big incisions, using tiny tubes, one with a camera. It turned out that the hole in her diaphragm was small. When they had everything in the right place they were able to stitch the diaphragm closed rather than having to patch it. The whole process took three hours. She is now back with Silas and so far she looks good. The parents were taking it all very hard but Nanette's Aunt, a nurse from Florida, is calmly spreading cheer amidst their seeming chaos. They have grown very close to Tanaya and Albert through this ordeal, to the point where they are not only exchanging invitations to visit, but discussing the possibility of the two young ones getting married some day because they have so much in common!

Tanaya and Albert have been able to lighten their dark moments as the Cookes have lightened theirs. Nanette's problems come very close to home because our dear friend (she assisted at Silas' birth), Karen Ellis's grandbaby has this same problem. He is scheduled to be delivered at Emmanuel Hospital in late June. Already we are sending prayers up.

Silas is doing well today. He is completely off of nitric oxide-like laughing gas and used for relaxing his lungs. The doctors say he doesn't need it anymore His ventilator is down to 35% oxygen level instead of the 100% when he was first intibated (meaning a tube inserted into his lungs to breathe for him), but he needs the level still lower before he is ready to change to the less harsh ventilator. The immediate goal is to get him onto the new ventilator so that they can do a brain scan. The one he's on prohibits the machine for getting close enough. For some reason the muscles in his little body are twitching; different muscles at different times. They don't know if he is having seizures or if he is just experiencing withdrawal from any one of many drugs he's been on. Pray for his little brain to be safe.

They are also anxious to give him a bath and change his bedding, etc. The poor little bummy doesn't know what it is like to be clean. The nurses are concerned about infection. Tanaya knows the exact times when they are going to clean up another part of his body and is right there to help. Today Kathy, our favorite nurse who has been with Silas from the first day, was cleaning his PIC line- the place where a miniscule tube is run into his wrist through a vein up his arm and down into his chest cavity. They use this line to administer drugs because his little veins are so fragile they'd collapse. Somehow in her maneuverings she disturbed the line and drew it back out of his arm. She was appalled, and she couldn't fix it. She then struggled to get a new one in through his foot. She is the resident expert in putting in PIC's. We've seen this several times as she's been pulled away from Silas (always leaving someone to watch our boy) so she could perform the procedure on other babies. It was the first time Tanaya had seen her loose her composure. She just couldn't do it. Tanaya chose the opportunity to give her a big hug- she told me she is always looking for opportunities to hug Kathy. I guess someone else will try again tomorrow because Kathy is off for four days. (Kathy has six children at home with her house-husband and is the bread winner of her family.)

I am still at home dealing with flu-ish kids, but I think we are all on the mend. If it proves to be so I'll take the kids up to Portland on Sunday to spend a day or two with their parents and to see their baby brother for the first time. Thank you all so much for praying for our situation. I've been shocked to hear how many of you have such similar stories, most with wonderful endings, but some with sad ones. Thank you for sharing them. We know we are not alone. You are showering us with encouragement and the love of Christ. We are blessed.

Jeannie



April 19, 2006

Wow, what a day. This whole process is such a roller coaster ride. One minute we are soaring up with our hearts in our throat our bodies tingling with excitement and the next we are plummeting to earth with no foreseeable end in sight. Yesterday I had resigned myself to the fact that our Silas would be placed on the next ECMO circuit and we'd be looking at another week of "will he or won't he come off". Today we arrived at the hospital at 8:15 am and Dr. Newman said, "I just tried to call you. The ECMO circuit is starting to break down and we've had Silas clamped off on a trial for about half an hour. I called the cardiologist, Dr. King to come and do another echocardiogram and the pressure in Silas' lungs looks fine so we are going to try having him off the machine." I cannot express in words the feelings I went through. Everything from sheer elation to acute anxiety flashed like wildfire through my brain. Albert and I sat with barely a breath passing our lips as we scrutinized every number on the machines and every glance from the staff. At 9:20 am, the ECMO circuit, which as of then was only clamped off, gave out and they said, "That's it. We are going to cut the canulas running from Silas to the machine because even if he does need to be on ECMO more, it will have to be on a new circuit." God's amazing timing. As my dear friend Alisha said to me the other day, "God does not do things early in yours and my lives, Tanaya. He waits until the very last second and says, 'Do you trust Me?' "

It was a tense opera of coordinated activity around our little guy. Dr. Silan, the surgeon who both placed the canulas into Silas and was now looking at possible removing them this afternoon, asked, "What do you think, Mom."

I answered, "Excellent!" as I chocked back tears.

He flamboyantly waved his arm and commanded, "Write that down! Mom says, 'Excellent!' " It was a declaration that could have been pulled directly from Alice in Wonderland. Needless to say, it helped break my tension a little.

Everything went smoothly. Silas' lungs are responding wonderfully to the respirator. He is doing so well that when we left for lunch, we got a call saying that they were going to remove the canulas from his neck. This meant that he for sure would not be going back on ECMO since it is nearly impossible to reinsert the canulas once they are removed. They were as certain as they could be that he was done with ECMO. We hustled back to the hospital to witness the procedure and instead saw the canulas GONE! This procedure had gone smoothly as well. No bleeding. The vein collapsed and clotted over exactly as planned.

Albert and I have been so used to seeing a constant flurry of activity around our son since he arrived. We were sitting there when an alarm on his IV drip went off and not one person was in the immediate room (they were just on the other side of the desk partition). It was the most bizarre feeling of the day. To go from having Silas and his machines having two nurses dedicated to staring at him and all his monitors since the moment we arrived to not having anyone in the room. I poked Albert and said, "Why don't you go start pushing buttons and see what happens?" ....... After my bumping the bed the other day, he was not amused. By the way, as they were getting Silas' IVs transferred over to his IV lines instead of ECMO, a nurse did the same thing I had done, bumping the bed and dropping it a touch. Well, it made me feel like a little less of a klutz anyway.

We have nicknamed Silas, "Bear". This is in part due to his black, black hair, in part due to his "hibernation" over these first days of life, in part due to his thick skin, in part because he is so greasy and dirty, and mostly because it sounds like such a strong animal. He is flourishing now and all the staff keep smiling. If his lungs are still doing so well, he could be off this high frequency ventilator and onto a regular ventilator in the next day or two. I am tingly with excitement. Once he is on the regular ventilator, he'll be able to be moved, washed (for the first time since birth), and ........HELD!

Dr. Newman joked tonight that they were going to hurry and force him to get better faster because the most important thing right now was getting him into my arms. She asked as well why we weren't taking pictures. (We haven't been able to because the flash would be too disruptive and Mom had taken her digital camera home with her.) Albert was gone and back so fast it made my head spin. We took pictures of us with Silas, with Silas' nurses, with his Doctor, of his ventilator, the "Ladybug" room he is in, of absolutely everything. I even got a picture of the drawer in this sophisticated, state of the art hospital that is marked, "Chest Tube Banding Thingamajig".

Tonight Silas needs prayer about his twitching. We are unsure of why, but he keeps twitching in all different parts of his body. Perhaps it is because of coming off medicines or just that he is so stiff from lying in one position for a week, or any number of things. Right now we are hoping it is not seizures. Dr. Newman will run some tests tomorrow morning to try and determine how his brain is doing. We are finally getting to the next step in his recovery. Even the word "recovery" makes me pause. It is filled with such a tremendous weight of hope. Thank you again for all your prayers and well wishes.

Love, Tanaya and Albert



April 18, 2006

Silas update from Jeannie:

We have had some discouraging news about Silas' condition. His liver and his kidneys are not doing well because the blood in the ECMO machine is getting thicker and it can't be thinned anymore. After the liver specialist came in today and consulted with the kidney specialist, he informed the ECMO specialist that it is dangerous to keep him on it any longer. (Silas has a specialist for every organ in his body and each specialist has a minimum of 12 years of experience.) Tanaya thinks that they will have to change out machines tomorrow. This is not good news as the babies always experience a set back because of the change. (It takes about a dozen people all working together to change machines.

The little guy is on a steroid to reduce the inflammation in his lungs- pulmonary hypertension is what he has. His body is loosing most of the puffiness from water retention in his tissues (I didn't send a close-up photo of him because he was so bloated looking when I took the photos), and Tanaya says he looks like a normal baby with ribs and everything. But now his skin is peeling massively from it being stretched so tight. He hasn't been moved, except to extend his neck, since he went on the ECMO machine. They are being very careful about cleaning him because any stimulation is not good for him. They wash his arms in the morning, his neck at noon, etc. The nurses are concerned about bed sores.

Something really bad happened to Tanaya today. She was helping the nurse wash Silas and all of a sudden the bed started to sink. The nurse nearly panicked but fixed it before any damage was done. When Tanaya realized she'd hit a peddle she almost fainted. Nurses came running to help her down from the stool she was on and tell her they weren't equipped to handle big people in the NICU. She still starts shaking when she thinks about it.

Nannette is maintaining but not well. Her surgery is still scheduled for Thursday. Pray she is able to have the surgery and that she doesn't have to go on ECMO.

On the home front: Jerusha has continued to vomit all day long. She asks for food in between times and I feel like such a meanie for not giving her any. Now I'm experiencing the flu symptoms again myself, so I think I'm in for another round of the same thing. I wish I wasn't so sick so I could enjoy loosing a couple pounds! Thanks for praying!

Love, Jeannie



Silas - April 18, 2006

Hello everyone. It has been a roller coaster morning for us here at the "miracle center". Silas' most recent chest x-ray showed his lungs have been expanding well. The wonderful caring staff at Emanuel have been hoping with us that when Silas had a trial off the ECMO machine today, his little body would do so well he'd be able to come off it by tomorrow. Alas, he is not quite ready. A compassionate cardiologist, Dr. King, squeezed time in to see Silas today at noon. He took his lunch break and instead of relaxing came to do an echocardiogram for Silas. He watched Silas' heart and blood pressure before coming off ECMO, while off ECMO, and when Nitric Oxide was added to the respirator gases. Silas' lungs were expanding okay, but his blood pressure around his lungs went up. This is part of the same problem he'd been having originally where his body is still not transitioning from life in the womb.

This has been a hard pill to swallow since we'd gotten so excited about his lungs expanding. The team of doctors and nurses will work with him over the next 48 hours before trialing him off ECMO again. We will be praying his ECMO circuit holds out until then. If not then they will have to switch circuits and it will almost assuredly mean back to square one with his lungs and an additional 5-7 days on the new circuit. In addition, they are going to try a steroid that sometimes helps at this point in the treatment.

They doc in charge today managed to get Silas' intubation tube (the tube going from his respirator into his lungs) changed to one of a larger size. This has sealed the air leak and will make it possible for the respirator to fully work when he is taken off ECMO. It was hard to see the blood when the nurse (our dear friend, Kathy) and I cleaned out his little mouth and when his tummy was was cleaned out, but that is a side effect of the blood thinners he is on. Any little scrape will bleed much more than normal.
His urine is quite dark as well, a side effect of the ECMO circuit getting old and wearing out.

I met another mom today under "Ducky 8". Each NICU bed has a sign above it. Silas and Nanette are in the "Ladybug" section which has only three beds. Then there is the "Butterfly" section and then the "Duckies". We often here nurses say, "If you need me, I'll be under Butterfly 4." It makes things feel a little more like a nursery instead of a hospital. Anyway, this mom (I didn't ask her name. Somehow we all just call eachother by our babies names) is Joshua's mom. Joshua was born on Jan. 28 with the same kind of hole in his diaphragm that Nanette has. He started his stay in the Ladybug section and is working his way down. He has had three surgeries and seems to be doing well. They are thinking he might get to go home the middle to end of May. I can't fathom, at this point, living in Portland at this hospital, great as it is, for four months. Goodness, I can't even think about being here for 1 month and that is at least as long as Silas will be here!?!?!

I am missing my three older children tremendously at this point. They are missing us as well. Jerusha was asking on the phone the other night if someone else could stay with Silas and I could come home for a while. Right now we've decided that Mom needs to stay home and take care of them, partly because Jerusha has a bad flu and partly because I can't be there with them. The next best thing to Daddy and Mommy and our house is Grammy and Papa and their house. Hopefully, the kiddos will all be feeling well and maybe one of us can bring them up for a visit soon. My arms feel so completely empty. I can't hold Silas yet and I don't have Micah, Savannah or Jerusha to hold either. Soon. Soon.

I am going to sign off now and go back to the hospital. Thank you all again for your prayers and support.

Love, Albert and Tanaya