how Riley’s doing

So here’s the update on Riley. For those who haven’t heard, he’s had some problems. (How Mom & Dad are doing will be discussed separately.) Thursday morning as Shelby was feeding him the nurse who was helping her with breast feeding noticed that he had a repetitive spasmic motion that he was making with his right hand and arm. She immediately had Riley rushed down to the Special Care Nursery where he was examined by the staff neonatologist. It was determined that he was having seizures that were showing up in the arm, and that he also had stopped breathing briefly during one of them. Blood was drawn for testing for a blood borne infection. He was started on antibiotics and Acyclovir just in case he had an infection of a bacterial sort or a herpes infection. He was put on an IV and was given Phenobarbital (a depressant) to calm the seizures. Riley was then taken to Children’s Hospital in Boston in a special ambulance with a special care team that included a staff doctor from Children’s.

When I got to Children’s Hospital on Thursday afternoon Riley was in the NICU (Neonatal Intensive Care Unit). He was being monitored constantly and was sedated to the point where he was asleep. He still was having occasional seizures which I could see. He had been given an ultrasound of his brain which came back negative (medicalese for no problem found). Overnight on Thursday Riley was also put on Ativan and Dilantin and the seizures stopped, although he had one further seizure overnight on Friday. His medication was increased after that and he has not had any since. During this time he was being fed exclusively by IV. On Friday afternoon Riley was given an EEG to scan his brain activity and see if there was anything that was consistently different than normal. After he had been on the EEG for about 30 min. the Neurologist looked over the scan and the scan was stopped since it looked totally clean. The original plan had been to continue the scan for 12 hours. Good news.

The next major test was an MRI. MRI’s are much more precise in what they can see than an ultrasound can be. The MRI was done this (Saturday) morning. The Neurologist came by to give us the results this afternoon. Apparently Riley had a stroke during the time of fetal stress that he went through during the birth process. This has caused an injury to a focal (and small) part of the left side of his brain. The injury causes an irritation to the brain tissue, which then causes increased and uncontrollable brain activity in the area. Thus the seizures.

Today Riley started to get fed by mouth for the first time. The great thing is that he is being fed his mom’s colostrum, which she has been pumping and bringing down to Children’s, as well as pumping while visiting the last two days. Shelby was even able to feed him by bottle tonight, which was a big blessing. Since we have a diagnosis now the doctors will be able to put together a treatment plan and will start adjusting medications to get him to the point where we will be able to take him home. We don’t have any idea what that actually will mean or how long the process will be, but it’s a start. At least there’s some hope that he’ll be coming home with us soon. He’s being put into a crib tonight rather than the incubator that he’s spent his time in so far. I’ve noticed that the kids who are in cribs tend to be the ones who go home soon after. A good sign.

update on dad

This has been an enormously trying and emotion-filled time for me. Each step that has been so totally different than what we had anticipated has been full of tears and heartache for me. God has placed an enormous love in my heart for this little guy. With that comes an extreme desire to “make things OK”, something that I can’t, of course, do. Leaving Beverly Hospital today was the latest heartache. The empty car seat was incredibly painful to see. But fortunately the joyous homecoming is just delayed a bit. Something to look forward to.

God has been ever present and has blessed us in so many ways. I am grateful for the team from the birthing center and also from Beverly Hospital who saw Riley’s distress during labor and rushed Shelby off for the C-section. Without that presence of mind the outcome would have been far worse. The staff at both hospitals have been tremendous in what is a very difficult time for us. The people of Children’s Hospital have to have been touched by God to have such an amazing combination of kindness, caring and medical competence. It is a great comfort to feel that I can trust my boy to them and rest easy, knowing that they’ll do the right thing.

We have been taken care of by friends who have made sure that we get something to eat, but also are giving us companionship and a good spiritual check-up at the same time. We have prayer teams holding both Riley and us up to the Lord all over the country. We feel those prayers and we feel the support that so many have offered. Personally, I really appreciate the phone calls that I have gotten, even though I haven’t had the time to return many of them. I feel that love and am blessed by the support. God has truly been giving us all that we have needed to get through this difficult time. Praise and thanks to Him as well as to all the people who are there for us in so many ways.

I had expected having a son to bring me through many trials that would test my faith and make it stronger. I hadn’t expected the trials to start so soon. But then none of this has gone as I expected, right from when Shelby told me they were keeping her at the hospital on Tuesday. God has a plan though and I trust Him. There have been times where that’s the only thing that has kept me going over the last few days. I can’t imagine what it would be like to go through this without Him to lean on for strength. I’m glad I don’t have to.

Hopefully the next time I write I’ll have some happy news to report. For now I just need to hit my bed.

I’ll go to sleep loving my boy.

Jonathan

update on mama…

It’s been an emotionally and physically draining past 5 days and as my cell phone is filling up with messages from my friends and loved ones, it seemed best to reply via the blog. Taking care of Riley as well as ourselves is taking up every ounce of energy we have. I hope to be able to talk to more of you in the days and weeks to come, but for now this may need to suffice.

First of all, thank you to every one for your calls of support, prayer and wishes for a speedy recovery. We have felt the arms of God’s love all around us through this time and we feel deeply blessed to have so many people loving us from both near and far.

Many have asked how I am doing and I guess I would say I’m as well as can be expected under the circumstances. It was hard to have to be separated from Riley just 24 hours after his birth, having only a few hours with him due to being heavily medicated after the C-section. Initially on Thursday afternoon I was taking care of business by letting folks know what was going on so they could be praying, but after about several hours the reality set in and I was weeping at the loss both my son and husband. It made the few hours that I had with Riley in my arms Thursday morning even more precious to me.

I was grateful to be given a day pass on Friday to be able to go to Children’s Hospital with Jonathan and spend about 6 hours with my son. The people at Children’s are wonderful and they let us stay with him and hold him for the majority of our time there. As long has he isn’t undergoing a test, we had pretty much full access to him. I was pretty wiped by the end of the evening, but it was good to be there nonetheless and my spirits improved having been able to spend time together as a family.

Today, I was discharged from the hospital and I didn’t realize how hard it would be to leave without our boy with us. Leave it to my sensitive husband to feel it first and then make me aware of it too. It was another plan that didn’t come to pass that J and I wept over together.

So I have those times each day when I just weep and let it all out – the sadness at how different reality has been from what we had hoped Riley’s birth and homecoming would be like. The disappointment is most keenly felt when I am emotionally and physically drained from the weight of everything we’re dealing with. I try to take one day at a time and not to think too much about future events that I can’t predict or control. I’m thankful that my body is healing well from the surgery, that my boy is healthy outside of the seizures and that the NICU docs and nurses are taking great care of him.

We haven’t let go of the fact that God is caring for us as a family and will give us what we need when we need it. We’re feeling the need of Him right now and learning to lean on Him for everything. Right now, all I am able to do is cry for help and strength. The Holy Spirit fills in the rest of what I can’t say.

Now that I’m home, we’re trying to establish a routine in which we can take care of ourselves as well as give our boy what he needs. Pray for wisdom that we can find the right balance so that we don’t try and do more than we really can. Many have offered to help in any way possible and know that we will not be shy about asking for help as we need it. We’re still just trying to figure out what it is we need at this point. For now, I think the need is sleep, so I’ll sign off here and get some rest.

Love,

Shelby