3 weeks, 4 days

Today you met Blayz for the first time. You and him got to sleep in the Moses basket for a bit while mom got pictures. He was pretty jaundiced so you and him looked mighty different. It’s amazing in just 3 weeks how fast you grow! Even your head was just so big compared to his. We laughed about how you’ll probably remind him that you are, in fact, older than him, if only by just 3 weeks!

You had your appt with Dr Pelinka today. You weighed 9lb 2oz and are doing just great! The first part of your immune studies came back just great! Today they had to draw more blood for the rest of the studies and also to recheck your Phenobarbital level. Hopefully if it’s stable we’ll be able to hold off on drawing it again for a few weeks. Your tone in your legs were a bit slow, but that might just be your normal. Grandma Sherrill came to this appointment with us to meet Dr Pelinka. She’s calling OHSU to see if we need to do a followup MRI before you go up on February 15th.
You slept good for daddy last night – only waking up once at 2am to eat. Otherwise you slept the rest of the night. Since tonight is my night I’m hoping I’m just as lucky!!
You’re starting to sleep with your eyes open, which is weird. You flutter your eyes around and make noises but once I wake you up you’re fine. Dr Pelinka says it happens sometimes. So far you’re just perfect! Until later, we love you!

Home

So, you were discharged on Wednesday 1.9.08. Dr Goins came in at 4:00pm to do his consultation. Grandma stayed too. Needless to say, we weren’t all that impressed with what Dr Goins had to say. He didn’t do much review of your chart, reports, or consults but yet came into the room saying that he was concerned with some of the abnormalities in your MRI. Dr Pelinka had just talked to the specialists at OHSU who had a very different opinion. Dr Goins let you go home that night and it felt great to get you home!

The next day we saw Dr Pelinka to explain our desire to have a 2nd opinion by the neurologists up at OHSU. She said she would contact them to see if they’d do a consult.

The next day, which was Friday, Dr Herbert called stating that the State had called stating that your eye culture that was taken the day your were seizing came back positive for Varicella (chicken pox or shingles). She wanted to put you back in the hospital for more IV Acyclovir and another spinal tap. Mom put her foot down and said NO! You were/are looking great and it’d been almost a week since you were really sick. She spoke to her colleagues who suggested just a mouth swab for a repeat varicella, which came back negative the next day. However, coincidentally – Maysen just got sent home yesterday with a letter that on December 20th, he was exposed to chicken pox at school.

Whatever the case – you’re doing well now. You have a consult appointment at OHSU for February 15th. The doctors called Dr Pelinka back on Friday (mentioned above for repeat swab) and said that all 4 of them sat down and looked at the MRI and all thought that there was nothing to worry about regarding the abnormalities on your MRI since they were consistent with changes in a brain that was just inflamed by encephalitis and nothing to worry about permanently. You’re #1 on the cancellation list, so we’re hoping that an opening comes sooner than Feb 15th as I’m optimistic that they’ll just let you off the Phenobarbital.

You’re sleeping during the day and awake at night, eating about 3oz every 3-4hrs. My favorite time is at 2am. You’re wide awake and it’s just you and I. Of course dad and I are taking shifts where one of us sleeps well and the other is on duty with you. You really like your baths! You just lay on your sponge bath mat and love the warm water wash all over you. You smile every once in awhile but I think it’ sjust when you toot. I can see the starts of dimples, though! Red hair and dimples – drives the girls nuts!

Will write more later. Your brother is tearing his room up. I love you very much.

Woo Hoo for once! Daddy was discharged from the hospital this afternoon. As though a miracle had set in, his strength and grip had regained (despite muscle enzyme changes shown on labs). Feeling pretty good, they let him leave to be with us in the NICU with you and so far has been doing pretty well. It’s so nice to have him back.

You're doing pretty good, too. I went to my doctor appt today, and everything is moving slowly (healing-wise). Then I went to see you. My morning with you started out frustrated because they had oxygen on you – stating that your oxygen desaturated to the 70s. When I looked at what was going on when your oxygen level fell, I found they were feeding you on your back. Apparently side-lying position feeding didn’t get passed along to the new nurses. Once they fed you the other way, you did fine. Dr Pelinka called and I asked her to write an official order that they have to feed you side-lying, and she did. The nurse had also said you were very lethargic and not waking up for her. But, once I started talking to you, you woke right up.

Later that afternoon, the lady came to hook you up to an EEG machine, the machine that catches seizure activity. Dr Pelinka had talked to the pediatric neurologist in Porltand who suggested doing a repeat one to compare activity. He also said that if you were his patient, he might just trying you off of Phenobarbital (seizure med) to see how you does – as the seizures are more than likely related to the illness rather than a chronic seizure disorder. I am hoping that they at least taper you off of it – as this afternoon you seemed very lethargic. We bathed you and you got very upset, but once we get your clothes back on we could barely wake you up to eat. I sure like to see your eyes, but this afternoon was fruitless on that front. Tomorrow Dr Goins, the pediatric neurologist here in town will be in for a consult. Dr Pelinka told me that you're looking so good that depending on what Dr Goins says – you might get to go home tomorrow! If not tomorrow, probably Thursday. Let’s pray Dr Goins has good news … oh! And the pediatric neurologist said he hadn’t seen the MRI that was read with an abnormality – but said that what it was suggesting as an abnormality seemed to be something normal in premies. That was good news – but we’ll wait for the official report.

Until tomorrow …

Dear Fin,

You're doing much better - you're alert, keeping your eyes open for 1-2hrs at a time. You're eating well over 2oz at each feeding, which are 2-3hrs apart, keeping above his 70cc/3hr status. You're breathing on your own - maintaining oxygen saturation mainly above 91%most of the time. You have no IV any longer, and the ONLY med you're taking is the seizure medication, which you gets now by mouth (liquid). The MRI which initially was read by a regular neurologist (Eugene has only one pediatric neurologist -Dr Goins- who is out of town until Wednesday) and it read as "no abnormalities". However, upon further inspection there were some "anoxic diffusions" which translates to a signal that there was some period of significant no oxygen. This MRI was sent yesterday to a pediatric neurologist in Portland for re-evaluation yesterday. We have yet to hear from him. You're still in the NICU, probably until evaluated by Dr Goins on Wednesday.

The "not-so-reprieve" news is that daddy was admitted to the hospital today. The day you were admitted he complained of headaches, Day 2 he ran a fever, Day 3 he had muscle aches, Day 4 (yesterday) he complained of really weak hands. Today he could barely get out of bed, put on socks, hold a pencil, or walk. So he went to the doctor today who sent him to an immediate neuro consult (with Dr Wilken who has been watching you while hospitalized) who said everything was checking out OK, but admitted him to the hospital for further tests (MRI, lab, probable spinal tap). She said it was likely the same germ that caused you to be so sick, so maybe if we could isolate the germ causing this, we would know what infected you too, in the end helping both.

I am in a daze and all this will probably hit me next week when life catches up with me. I had to miss my own doctor appointment today - and have been showing some signs of poor healing. I needed this reality to see that my family needs me ... well. So I'm trying to keep that in mind while both being there for my family too. Where is the balance??

Scariest time of Momma's Life

We have had quite scary last few days, Momma's Fin. The last few days have validated just how much you mean to our family. We have been praying so much for you as you have been one sick little boy.

Wednesday 1/2/08: Daddy commented this afternoon that you sure were complaining when you were moved. When you'd move or we'd move you, you'd cry out - almost in pain. This night Grandma Jo and Grandpa Dave were on their way to Oregon to see you for the first time. While I was holding you, I noticed you were breathing rather funny. Daddy and Grandma Jo convinced me that you were ok, perhaps just getting grumpy in your old age. I said if you were not better we'd move your Weight Check doctor appointment from Friday to tomorrow. I woke up at 3am and daddy was taking care of you, and said you weren't eating and only crying. I slept with you on my chest the rest of the night.

Thursday 1/3/08: Dr Herbert said she'd see you at 11:00am. We got there at 10:30. The nurse brought you back and you weighed 7lb 15oz. You were running a slight fever and I asked her to check your oxygen saturation. She did and it was 82% - I started crying immediately as I knew 82% wasn't good. Immediately Dr Herbert was in the room and was arranging ambulance transportation to the NICU. When she realized there was a hold on the ambulance she asked us to take him over there immediately and she cancelled her patients for the morning and met us there. The next few hours were almost unbearable as they tried 3 times to get a spinal tap, drew many labs, took many swabs of uncomfortable parts of your body, started IVs, started medications, took XRays - all while you were crying. It was very, very sad to watch. Many people came to support you as you went through this. You were on oxygen but doing well. So far the tests had all come back negative and you seemed to be doing "ok" in the scheme of things. Daddy and I went home to get some rest (I am still recovering from surgery and had no medication in 10hrs). Dr Herbert said she wanted to transfer you to just the regular pediatric floor, but if we were leaving she'd keep you on the NICU floor to be monitored closer and we'd transfer in the morning. Maysen stayed home with Grandpa Dave and Grandma.

Friday 1/4/08: Daddy and I expected you to be transfered. When we got to the hospital, the nurse explained that earlier that morning you had a 45 second period where you stopped breathing. You regained yourself on your own, but becuase of this, you weren't being transfered. That scared me to death! She said you had just eaten and were doing ok. It was about 9:30am. I was holding you when I noticed that you arched your back, turned your head, and while holding my hand were rhytmically hitting my chest with your hand. I immediately knew this was seizure activity. I asked the nurse to watch and by then it was somewhat over and she sort of blew it off. 5min later you were seizing again, and she saw it this time, too. The neonatoligist (Mike) was on the floor and he wasn't sure it was true seizures or myclonic contractions due to prematurity. Before treating you with a medication, he wanted to make sure so he ordered an EEG to watch your brain activity. As we waited for the machine to come up, your seizures only got worse. Luckily you were breathing through them but I can tell you it was the hardest thing mommy has *ever* had to do - sit and watch you seize in my arms. I felt so hopeless, weak, and vulnerable. Somehow, I got through it. 5 hours later, they got the machine up there and you hooked up to 21 probes on your head. Grandma Jo and Grandpa Dave were there while you were seizing and convinced me to take a break while Daddy stayed. When I got back from lunch daddy was crying and very scared. He said while I was gone you had a very bad seizure and you stopped breathing for over a minute, turned blue, and your oxygen had dropped to a very critical level. Daddy talked to you the whole time holding your hand saying "Ok, Trooper, you'll get through this" never leaving your side. The respiratory team had to come in and recesitate you, but they had caught it on the machine and you were now being given Phenobarbital to help with the seizures. Within the 1st dose you were much better, but had a mild seizure. So they gave you a 2nd dose. This helped greatly, but the neurologist noted one more seizure so one last dose was given. You were completely seizure-free except for these small tremor-like seizures that were nothing of concern. Finally, in 2 days you were resting. They were concerned that you would be better off at OHSU in Portland, but after Dr Herbert talked to the pediatric neurologist up there, he assured he that all that they would have done up there was being done - and we decided to keep you here. Physically and emotionally worn out, Dr Herbert convinced me to go home as to not get sick. In the middle of this Hell Day, Daddy discovered he was running a fever, so wasn't around much after that. We went home and tried to sleep.

Today: You were a completely different kid. Yesterday you weren't eating, Tylenol had to be given rectally so you wouldn't aspirate because you weren't swallowing, you were so sedated you weren't responding to any touch. We got to the hospital and you were holding your own pacifier to your mouth. I asked if we could feed you and once we got the OK, you ate over half the bottle! You were holding mom's hand, you were pink, you were off oxygen, you oxygen was great on your own, no seizures (not even tremors) since yesterday, and your probes were all off your head. They took you to MRI and although we haven't gotten the definative report, the tech said it looked completely normal. Talk about a breath of fresh air!!!! I haven't cried so much in the last 2 days than I have these last 2 days. I am hoping that this is all just viral like they are thinking. You were born right in the middle of a viral epidemic in this family. It's hard not to blame ourselves on who was sick and what could we have done - because that is hard. We want nothing but to see you healthy and finally today it looks like you're getting better. I only pray that you will continue to get better.

God be with us ...

Scary

Fin,

Tonight my heart is scared. Yesterday you started crying whenever you were moved - something you've never done before. Grandma and Grandpa were on their way from California to see you for the first time so we were waiting up late to see them. You were breathing fast but daddy convinced me it was just you. I decided that I'd make an appointment to see Dr Herbert this morning.

We got to the doctor's office and your blood saturation was only 82% and you had a funny looking rash all over your body. Dr Herbert came in right away and stated you were going to the hospital via ambulance to Sacred Heart NICU (neonatal intensive care). The ambulance was backed up, so we took you ourselves and we got there within 5min. They did a chest xray, nasal swabs, IV sticks, catheterized you, and did a spinal tap. Luckily so far RSV, influenza, and pneumonia have been ruled out. The spinal tap they did went well (after 3 pokes) and the preliminary results looked as though meningitis wasn't the culprit.

They aren't sure at this point what it is. You have the rash still, but you are breathing on your own without oxygen. You're on antibiotics and IV fluids. You'd lay on the table and just cry. Finally I got to hold you and once I did you calmed down.

I didn't take any of my pain pills to the hospital so daddy and I came home knowing you were in the best hands out there. When we left your fever was coming down and you were sleeping soundly. The nurse was right outside your door and we were assured you'd be fine. Tomorrow we're going back up to the hospital to be with you. They should be moving you to another less-invasive floor - the pediatric floor - tomorrow. Mommy's heart is hurting becuase there were a lot of sickies that wanted to come and see you when you were born and they held you. I was one of them and so was dad - but we were all so careful. I just hated seeing you so sick and hope you're feeling better tomorrow.

I can't imagine what I'd do if something happened to you, even though you've only been on this Earth for one week.

I love you.