June 2, 2006

We are home.

It seems as though there should be nothing more to say than that; like it is the end of a story, the conclusion of a movie. And yet there is so much to say I don’t know where to begin.

The day we were to leave, my mom and I arrived at the NICU at 9 am to witness what was to us a disturbing scene. The nurse was carting Silas around on her hip shoving a bottle into his mouth. She then informed us she’d been trying to get him to take it for an hour. First of all, it is written all over his chart to call Mom if baby wakes up. She was his nurse once before so there is no reason she should not know this information. Second, the physical therapists have been working with us to help Silas regain his muscle tone and one of the things they said specifically applies to all babies who’ve lain prone for any length of time is that you do not carry them on your hip. This encourages the splayed leg behavior they’ve already developed. Third, my son has oral aversion. It takes a great deal of time and patience to persuade him to take a bottle. Not only had she been jamming this bottle into his mouth, but it was full of vitamins and Prilosec, both of which taste nasty. We’d been shown by other nurses how to put the medicines in a tiny bit of milk and feed it to him when he is most hungry before giving him the rest of the feeding. She had placed them all in a full bottle and been forcing it into his mouth. It took over three hours for me to get him to accept that stupid bottle again. Even then, he ate very little for the next day or so of feedings. (Now that we’ve been home awhile, he seems to be doing better again.)

I cannot express in words how shocked and angry I was at this nurse. When I asked why I wasn’t called, she replied that she didn’t know that that was what I’d wanted. Then I asked if I could please get some regular milk for Silas, without the junk in it. She said yes, but she wasn’t pleased. All that day, she acted as if she didn’t care the least bit about the kids in her care, she was just trying to check things off her “to do” list. The one other time she’d been Silas’ nurse, she’d been too busy with the other babies in her charge to have much interaction with us (thank goodness). I have had personality conflicts with other nurses and disagreements about care, but they have always had my child’s best interest at heart. Even when they haven’t been so kind to me, it was obviously because they thought they were doing what was best for Silas. I suppose that after six and a half weeks in the NICU and dozens of caregivers, to find just one that is truly awful is a statement about how wonderful the caregivers really are. Other than this person, the nurses HAVE been truly wonderful. Like I said, even the ones who weren’t as I’d have wished them to be had Silas’ recovery foremost in their minds.

When she finally led us out of the NICU my heart started to race and I felt like throwing up. I was just sure someone was going to be running up behind us saying, “Wait! You can’t go yet!” It was all I could do not to fly out those doors shouting, “He’s mine, now. He’s not yours any longer!” Wow. I can still hardly believe that it is over.

As exhilarating as it has been to take my little bear home, it has also been traumatic. It seems as if I’m always on the verge of tears. I’ve cried because I missed spring in our beautiful valley. I’ve cried because I didn’t get to see all the pastures fill up with babies. I cried when we drove up to my parents’ house and my parents’ dog, my sister’s dog and my brother’s dog came running around the corner. No Juno to welcome me home. I miss our dog with a great ache in my heart. I’ve missed my home, my friends, my bed, my kitchen, my town and, of greatest importance, my family. I have sorely missed our dear friends, the Cookes. I have missed sharing our caotic lives together and checking up on eachothers' babies. I miss the bleary eyed smiles JoAnn and I would exchange in the middle of the night as we were putting our expressed milk in the freezer. But the reason I’ve cried most is because of the dear friends I’ve left behind in the NICU.



Dustin and Amanda have given me permission to post their daughter's pictures on Silas' blogsite so that everyone who's been praying for her can see her. They also gave me a picture of Aunna when she was first born. Wow, is all I can say.



They still have months to go before they can take Aunna home. It is, however, such exciting news to report that Aunna is now over three pounds. Still such a tiny bundle, but she is growing and showing everyone around her how God does miracles.



What a fighter and, because of that, I’m sure she’ll be a handful someday for her parents! I can’t wait to see her having her two year old birthday party with Amanda trying to keep her from throwing a fit because she didn’t like the bow on her present or something! For right now though, her and her mommy are content with the simple gift of touch.



There are also so many others whom I care so deeply about: Trina with D.J., Jessica with 17 month old Serenity and twins Devon and Destiny, Emily and her family, the parents of the last three ECMO babies, and some whom I’ve never met, like the family of the little twin who’s been at Emanuel NICU for over seven months. . . I’ve not shared their stories in my emails, but they are etched deep in my heart. I now understand why people have reunions after they’ve shared such an intense experience such as this one. We get so entangled in each other’s emotional lives that we are forever knitted together in a kaleidoscope tapestry with every family a unique and vibrant set of colors.

And Becky. . . I just love this girl! Her cheery demeanor is contradicted by the dark, tired circles under her eyes and the pain mixed with love which is etched into her face when she looks at her son. Joshua is such a wonderful, beautiful boy who makes all who look at him fall head over heels. (Just ask the nurses!)He is ever ready with a smile and obviously loves his mommy so much.




They have at least another month in the NICU after complications with his last surgery. The surgeon discovered that his liver and other organs were so enlarged that they had pushed his stomach out of easy reach. And because the surgeons had to mess with all the organs in order to get access to his tummy, his entire digestive tract shut down. If you didn’t know from previous emails, he only has a third of his bowel left anyway. He also developed a localized infection at the incision site.
I’d ask that everyone would pray that his little guts would start working and he’d stop vomiting from this last surgery. His IV nutrients are destroying his liver and kidneys. If he continues on these, he will need a liver and/or kidney transplant. I’d also ask that prayers be sent up for Becky’s peace and strength through this whole ordeal. She is such a great mom. She rarely leaves Joshua’s side. She is intimately involved in all his care and is devoting every minute possible to just being with him. Pray also that the surgeons and doctors in charge of Joshua’s care will have soft, compassionate hearts and will listen to her when Becky wants to try more natural approaches to some of Joshua’s care. Pray that they all treat her and her son with a gentle touch.

Since his birth on Jan.28th, Joshua is nearing the $2,000,000 mark for his care, at which point his insurance reaches its lifetime maximum benefit. I am prayerfully sure that the state would take over payment after that, but it is weighing heavily on Becky right now. Imagine, he’s not even half a year old and already he is maxing out his lifetime benefit. It feels unreal.







[I've taken this picture Becky gave me of Joshua when he was younger and touched it up for her on the computer. I've removed the feeding tube from his nose and the rash on his cheeks caused by the tape. Isn't he just darling?]





Silas and I were off Wednesday morning to visit Dr. Jenkins about Silas’ blood pressure. Dr. Jenkins treated Silas when he was on ECMO and he comes all the way from Portland to do a clinic here in Medford. We had hoped my little man’s blood pressure would still be stable and we wouldn’t have to give it another thought. Even though we didn’t get an accurate reading (he threw an absolute fit about the cuff), his slightly mottled coloring is cause for concern. We will be getting his pressure checked at RVMC twice a week and going to Portland once a month for thorough evaluations.

Then, in the afternoon, we met our pediatrician, Dr. Williams, for the first time and found out Silas is gaining weight but not even half of what a normal newborn would. I had taken liberties with his feedings and stopped fortifying his milk with formula. I wanted to see if he could make it on his own without the nasty fortifying formula which upsets his tummy. I figured I could give him a chance to see what he could do without all the micromanaging of every last drop. I have also been letting him sleep at night for as long as his little body needs to. He seems to sleep for a five or six hour stretch and then another three hours after he is fed and diapered. During the day time hours, however, I try not to let him go for more than two hours between feedings. I will find out on Monday when he gets weighed again if this strategy will work or if we’ll have to go back and reassess once more.

Here is a brief photo diary of Silas' journey:


This is at Providence Hospital shortly after birth. He is about to be transported to Rouge Valley NICU. We really had no clue how serious this whole situation was and how close we had (and would) come to losing our precious little bear.




These are the machines that God used to save his life. You can see the whole big ECMO (heart/lung bypass) machine, computerized IV dispensers, specialized bed and ventilator. If you look closely, you can just make out a thatch of black hair in the middle of all this seemingly sci-fi equipment.





This is what our little bearcub looked like while on ECMO. He was swollen with water retention and bruised from the traumatic birth. It is hard to believe this is the same child I now cradle in my arms and smother with kisses every day.







This picture was taken after he was diagnosed with ecoli pnemonia and yeast sepsis, a blood infection. He was so sick and I was grateful for the narcotics he was on.








He sleeps peacefully in this picture with all the tubes (except the nasal-gastric feeding tube in his nose) gone from his body .

Silas has loved baths from the beginning. He looks so serious and concerned but doesn't fuss. He just grunts and groans like any self-respecting bear cub would.










This is one of his nurses, Nancy, whom we caught carrying Silas in her vest: a little papoose.









And this is the most wonderful nurse ever, Kathy. She is a gem who's heart shines brightly for the wee ones in her care including her and her husband's own six children.














This was Silas' "big boy crib" and we worked on personalizing it.

This picture was taken by Linnea Osterberg, a professional photographer who comes through the NICU taking babies' pictures for free. From what I understand, her brother and his wife had a child who stayed in the NICU once and it touched her heart.

We can’t express enough how much we have appreciated all the helping hands that have gently brought comfort through this trial in our lives. We have felt the prayers through our very souls and have seen the wonder of the Lord’s mighty miracles because of them. I am in awe of the naivety in which I’ve lived. The little infants in Legacy Emanuel NICU number about 40 on average on any given day and every day there are small and giant miracles that Jesus performs. His omnipotence has never been more clear to me than when I’ve watched His moving in the NICU. Whether it has been life or death that He has chosen in His almighty wisdom, He is moving around and through every single one of those babies. Consequently, I have become keenly aware of the fact that He is also moving around and through every single one of us.

Likewise, when I see each exquisitely formed blade of grass I am reminded again that it doesn’t come close to comparing with the complexity with which we were formed. I’ve come to understand so much about the anatomy, physiology and biology of the human body and am amazed at the intricacy of it all. Most amazing is that He keeps in His mind every detail of our physical, emotional and spiritual structure! We truly are fearfully and wonderfully made by an awesome Lord. He alone sustains us whether or not we stop and realize it. It is by His grace alone that we are allowed to take another breath. How merciful is my Jesus to allow me to be a mom to four of His precious children which He made in His image. I praise His holy name!

By His grace, I will update the blogsite periodically. It will not be as consistently as it has been through this tumultuous adventure, but I believe that Silas’ story will be a gentle reminder to everyone that God is a very real person and that He is still doing His miracles in the twenty-first century. Thank-you to all who have joined us on this “journey through the NICU. . . and beyond.” God has used you to help sustain our family and He has used this experience to help us grow closer to Him and each other. Thank-you.

Love in Christ, Tanaya