Dear Friends and Family,
Before I begin, be warned that I’ve written a novel. This is what happens when I go for so long between updates. :-) Prepare yourselves.
I must start by apologizing for taking so long to write. We have had internet access issues for the past month and a half. This, however, is only partly to blame. I realized that I was getting so lost in other people’s lives and stories that it was inhibiting my ability to function as a good mom, wife, etc. The pain, joy, anguish and triumph of all the precious families I have come to care about so deeply is so real to me that my emotions were swirling around in a whirlwind of conflict. It has been difficult (to say the least) to be embroiled in our own family’s recent ordeal, but I’ve also added many other family’s trials into the mix. I have actually been avoiding dealing with my own emotional rollercoaster by immersing myself in other people’s emotions.
Since I’ve been unable to access the internet for a while, I have been forced to face a few of my own demons. I realize that I blame myself for a lot of what happened to Silas and I feel so unworthy to be allowed to be a parent. I get annoyed, upset, and down-right tired of dealing with all the arguing and whining at times. Then my memory reminds me of all the mothers who would give *anything* to have my “troubles” and I am wracked with guilt for having even a hint of these feelings. Consequently, I am struggling with depression. But it isn’t depression in the usual sense of the word. It is a struggle of self. Do I allow myself to “escape” into a “poor-me-I’m-so-awful” depression where I don’t need to take responsibility for anything or anyone, including myself? Or do I knock off the self-pity party and get back to the work of being a good wife to my husband and raising a family to the absolute best of my ability? Therein lays the turmoil. It is a daily struggle with some days turning out better than others but I will continue to strive for God’s best in our family.
The following was written August 3, before I realized the internet issue.
Wow. It seems a lifetime has been and gone since I’ve last written about Silas. I have not accessed the internet for awhile and I miss staying caught up on all the lives of the online families I’ve come to care so much about.
I’ll start by giving updates on all the NICU babies I’ve written about previously:
Aunna went home with Dustin and Amanda and after three short days was taken back to the hospital with a fever. It seems her shunt had gotten a staph infection. It had to be surgically removed while the infection was fought with antibiotics. She will need yet another surgery to reinsert it. I haven’t been able to talk directly with Dustin or Amanda, but I can only imagine the frustration and fear they must be feeling. Even the thought of Silas having to go back to the NICU is so horrifying that it literally makes me nauseous. However, I have watched this little Aunna overcome such amazing odds to survive thus far that I am certain she will continue to overcome. It has been my pleasure to be a witness to the awesome miracles God has performed on her tiny body and I rest assured that He will continue to do a mighty work in her life.
Becky is, at long last, home with her Joshua. He celebrated his six month birthday in his own house. Praise God! Their struggles are not even close to being over, but at least they are living under the same roof. His surgery to replace his broviac IV had gone fairly smoothly but the line slipped out of place and leaked into his surrounding tissues. At the same time, the PIC line perforated the vein and leaked as well. Becky said the swelling was awful and he was not doing well. She was at the point where she thought he wouldn’t make it through another surgery and told them to not revive him if he died. He has been through so much and she just didn’t want him to suffer anymore. After this last surgery, which placed yet another broviac, this time in his hip area, Joshua came back still intubated and on the vent. As you can imagine, this was terribly hard for her to witness. However, as soon as they extubated him, Joshua looked at his mommy and grinned from ear to ear as if to say, “What are you worried about? I’m fine!” He is the sweetest baby I have ever met.
Now they are trying to cope with a host of new issues. Becky takes care of Joshua full time with only limited relief when her mom comes home from work at supper time. A home health nurse comes by once a weak to asses his situation, but there are no hands on caretakers available through insurance. If Joshua needs to go anywhere, it takes three people to get him there and he vomits the whole way. To complicate things further Becky has no car. Joshua has new surgeons in charge of his care and they are very concerned about how chunky he is and are trying to resolve his weight issues as well. It is still a rough road this family is on, so please keep praying for the Lord’s direction, strength, wisdom, miracles and mercy. He created Joshua for His mighty purpose and has allowed this precious child and his mom to touch the lives of so many people. I, for one, am made a more compassionate and patient woman for having known them.
About Matt and Rachel; everyone asks how they are doing. When you stop to think about it, that seems like such a silly question and yet I’ve asked the exact same thing. We all know that it has ripped their hearts into a million little pieces to have said goodbye to Judah when they hardly had a chance to say hello, so why do we ask the question? I have come to believe that it is less a true question and more an expression of care and concern. On that note, I think they are coping with their loss better than most of us would. There is definitely a sparkle missing from Rachel’s eye, but her smile is genuine. The world keeps tramping on while they are rebuilding the shattered pieces of their lives, so please continue to lift the Southmayd family up in prayer. I am praying specifically for comfort, peace, and restful sleep. (You can see pictures posted on Judah’s website by clicking on his link from my blogsite.)
Shanda who had her CDH baby after we left the NICU—we met her when she was touring the hospital and Silas was on ECMO—has sent me pictures of her beautiful Ryan and he seems to be doing well. His chest tube is out and he is starting to get real food. He has also been moved out of Ladybug section, a wonderful sign. I can’t wait to meet this little trooper.
It is amazing how many lives this CDH condition affects. I’ve recently been made aware of yet another woman whose son has just gone through a surgery to repair the hole in his diaphragm. His lung was deflated and his organs needed repair as well since they were not in their correct places nor were they growing properly. What makes this family so unique is that her son is 30 years old. He had had this condition from birth, of course, but he was just recently diagnosed with a Congenital Diaphragmatic Hernia. He will be in recovery for a while but it looks like he will be fine. Thank-you, Lord, for your grace and mercy.
Silas is doing well. Physically he is meeting his milestones. He is rolling over, holding his head up, standing with support. There doesn’t seem to be any signs of a stroke or brain-bleed from being on ECMO. He is now thirteen pounds and growing steadily. His legs have gotten chubby again and he seems more well-rounded (pun intended). We are pleased with his progress even though his cousin, Luke, who was born two months later than Silas and a pound and a half lighter, is now over fifteen pounds. Don’t worry Luke, Silas will catch up and give you a run for your money!
I was delighted to run into Vanessa when I arrived for a WIC appointment. She is Cayden’s mommy who lives in White City. If you recall, Cayden arrived with CDH at Legacy NICU about three weeks after Silas was brought there. Both of our babies were discharged the same day. He is adorable and is doing well. Way to go Cayden!
We have an appointment next week at a developmental clinic to asses Silas’ cognitive functions. There are a couple of behaviors that are concerning us at this point, such as avoiding eye contact and failing to track an object that moves. He is also not yet reaching for anything. We’ll see what the clinic people have to say about all of this. I was expecting serious brain damage from lack of oxygen if he survived, so these things are no big deal and we’ll deal with what ever happens with a grateful smile on our faces. For Silas’ sake, I hope I am being overly sensitive and that his brain development is just fine.
Silas is no longer running low grade fevers because of teething, but he is still drooling everywhere. That’s okay; he reminds us of Juno (our Great Dane). We all still miss Juno terribly, but I think we are ready to start looking for another Great Dane. We are not the sort of family who can live without a dog. We would prefer to rescue one so we are looking at Dane rescue places on the internet. I know we will never be able to replace Juno, but maybe we can find a dog that is wonderful in his own way.
September 6
Onto the recent update; so much has transpired over the last six weeks that I hardly know where to begin. Both Albert and I have successfully negotiated passed our birthdays without too much fuss. Just another notch on the belt of experience and on we go. Our foster care home has been licensed for over a month now and we still don’t have a resident. We had six possible applicants before our wheelchair ramp was installed, but all required the ramp for one reason or another. Since the ramp has been completed however, the only applicants we’ve had have all required a higher level of care than we are licensed to perform. Meanwhile, we are still maintaining two houses, trying to pay medical bills both past and present, preparing for one more trip to Portland in early October, etc., etc. So here we sit, patiently (and sometimes not so patiently) waiting for the Lord to continue to work in this path He put us on. He has been marvelously faithful thus far and I am promised in His word that He will continue His faithfulness to those that love Him.
Micah, turning 12 on Sept. 11, has been a wonderful help to me. Silas adores him and is almost as content in Micah’s arms as he is in Daddy’s and Mommy’s arms. Micah can at times make Silas smile, and even laugh, when we cannot. I was informed that, “Mom, it’s a brother thing.”
Savannah will turn 9 on Oct. 8 and is a regular little mommy with Silas. She had her first scary moment with him when she set him on the bed and turned around to grab his swing. He, of course, promptly rolled off the bed and smashed his forehead on the nightstand. Jerusha, now 5, was on the verge of panic asking if he had to go to the hospital again. Savannah was so distraught that she could hardly speak. Silas simply cried a bit, took a nap and is perfectly fine aside from a bruise. Mommy, however, well, lets just say that I believe my heart rate has returned to normal but I may need medication to dispel the adrenaline that coursed through my veins when the incident occurred. And Daddy instantly forbade anyone from ever holding Silas again. (He has since revised that statement to include supervised holding rights.)
Micah and Savannah had their yearly school testing done and each performed very well. Their scores were above grade level and well above average in some areas. Micah has a college level understanding of math concepts and scored overall as eighth grade in math even though he will only be starting sixth grade soon.
Savannah, going into third grade, was so excited to learn that she has an eleventh grade vocabulary that she squealed with delight. She then promptly inquired what a vocabulary was.
Jerusha, who will start kindergarten in January, proudly informed us all that when she takes the test she will do better than either of them. She later asked if I’d buy a journal like Savannah’s for her to write in. When Micah said she needed to learn to write first, she told him she could spell “I hear it.” With an air of confidence, she rattled off, “G, H, E, 1, 8, 5, J, 4, S, R, 3. See!”
If anyone would like to get to know their children better, I suggest asking the following question that I asked my kids on the way home from town the other day: “If I didn’t know you, what is one thing about you that it would be very important for me to know so that I could be a good mommy?” These are their responses:
Micah (age 12): “I have a gentle heart.” I thought this was a wonderful insight. I then encouraged him to remember it when he was playing with his sisters…!
Savannah (age 9): “I’m the best kid in the whole world! No seriously, it would be important for you to know that I need to read and write a lot.” The word “need” strikes me. My mom has suggested that Savannah uses stories to escape into. I tend to think she is right and I’ve been trying to tear her away from the three or four books she has going at the same time and send her out to play or get a game going.
Jerusha: “I think you should know I’m a princess and I don’t do work.” Well, what could I say to that? I made a mental note and Jerusha now has some wonderful new, daily chores of her own. Welcome home, Cinderella!
My mom went with Silas and me to his appointment in Portland at the end of August. We enjoyed the relatively relaxed time together and Silas’ appointment with Dr. King, the cardiologist, went well. Silas still has a slight heart murmur and the echocardiogram showed that scar tissue from the ECMO cannulas still remains along the heart valve. Neither of these diagnoses seems to have any effect on the function of Silas’ heart. (Thank-you, Lord, for Your continuing mercy.) Dr. King foresees no problems in the future and gives Silas’ heart a clean bill of health.
The most informative moment of the visit, however, came when Dr. King said that at Silas’ age, hair loss will remedy itself, unlike at Dr. King’s age when it falls out for good. :-)
Our difficulties at the moment are dealing with Silas’ anxiety attacks and nightmares. Physically and mentally he seems to be progressing well, but these times of panic are absolutely heart wrenching. Everything he looks at makes him startle and cry and nothing I do comforts him. He won’t nurse and isn’t able to be distracted. These episodes sometimes last hours until he simply falls asleep from exhaustion. Please pray that Silas will have God’s all consuming peace fill his little soul and replace the fear he feels during these times. Also for wisdom on my part to find a way to make him feel safe when he is so scared and patience on the days when I’ve had very little sleep. As all parents know, it is difficult enough to deal wisely with children when you are well rested and it’s very hard when you are not.
Silas and I visited Aunna and her parents while we stayed in Portland. She is almost nine pounds and is such a happy little one. Her infection is gone and her shunt has been reinserted without much ado. She eats like it is the most fun thing on earth and her smile would brighten the darkest room.
It is amazing to think that she is a week older than Silas, but from conception she is three months younger than he is. Dustin and Amanda are so thrilled to have her home and Aunna, I’m certain, is just as thrilled to be with them.
I was also privileged to visit Becky and Joshua AT THEIR HOME! It nearly didn’t happen because of a medical emergency. The day I was going to her house, Becky called to say she was rushing Joshua to the ER. It seems that when she was flushing his central line (cleaning out his IV line with sterile saline) it ruptured. Since it is directly in a large vein, blood started spurting out of the hole in the line which was about an inch or two from where it disappears beneath the skin. To make a long story short, the tubing was cleaned and spliced together with new tubing and Joshua was sent home after taking a nap through the simple procedure. Becky asked the nurse why she hadn’t been briefed that something like this could happen and what to do if it did. The nurse informed her that she only knew of this happening once before and that the possibility was so remote that no one had even considered it.
At any rate, Joshua is back home and doing okay. Becky and I realized that Joshua and Silas had never actually met and we watched as they studied each other with great delight. Perhaps they knew somehow that they were kindred spirits linked by unfortunate, life-threatening circumstances. Or perhaps they are just babies who are naturally intrigued by other baby’s faces. I prefer the first conclusion.
Joshua is still a roly-poly boy with a cherubic face. His bright blue eyes pierce you with their innocent joy and curiosity. He unfortunately continues to vomit regularly, but the emesis is less acidic and not burning his skin as badly. Please continue to lift him up in prayer for his myriad medical complications one of which is a liver that is four times the size of normal. He will need a transplant one of these days and his kidneys may need the same. Becky is hanging in there but is very isolated. I wish she lived closer so that I could help her out with the intense stress of Joshua’s life and death care. For now, I pray that God infuses her with His almighty strength and graces her with His peace that goes beyond what we understand here on earth.
I was thrilled to finally meet baby Ryan Lewis while we were in Portland. Shanda, his mommy, took me to visit him at nine o’clock the night I arrived at the Ronald MacDonald House. He flew home to a hospital in Alaska the next morning. Ryan had to be placed back on a ventilator after a period of being off, but the doctors are certain he won’t need ECMO so it was arranged for the family to fly home. The Lewis family still has a long, bumpy road ahead of them, but they are elated that the road includes Ryan’s recovery.
On a sad note, another baby at Legacy Emanuel has succumbed to the fatal effects of CDH. While we were saying goodbye to Shanda and her family, another mom was saying goodbye to her child who was being disconnected from ECMO. Out of the eight children who’ve been placed on ECMO, starting with Silas, only Silas and one other boy have survived. (The other survivor was born with meconium—first bowel movement—and had severe pneumonia.) The other six babies had CDH (congenital diaphragmatic hernia). What I wouldn’t give for a solution to this horrible birth defect. It is such a random thing and there is nothing known to prevent it. I had heard of it before, but it is so much more common than I ever realized and, even though statistics say it is a rare disorder, there are simply too many families suffering because of CDH. Perhaps someday this birth defect will be able to be repaired as easily as putting a band-aid on a wound. For now, continuing research and vigilant prayer are needed to help every child born with CDH.
I’d like to thank all of you again for your faithful prayers and kindnesses over the past months. I am working on getting thank-you cards and birth announcements sent out. Silas is five months old and I am finally announcing his birth?! In any case, I wanted to say a quick thank you right now and let you know that we greatly appreciated the out pouring of support from so many generous people. With all my heart, thank-you.
Love, Tanaya
P.S. I just had to add a picture of Nanette!
