Penberthy Place: 2012

Although a little dark this is Neil's Room in the NICU. This Panorama makes his room look big!

We were able to go down to Mick (Sean's Aunt) house for Christmas dinner. It was wonderful being around family. I won't lie though and not say it was so hard not being able to have Neil there with us.

Liam had a lot of fun playing with his cousin Loretta, they are just 2 months apart. Among other things they liked to play "night night".

Christmas Morning I got to hold my baby boy after not getting to hold him for a week! It was wonderful! It was hard not to sit there and cry. I would try singing or talking to him, but the big lump in my throat and the tears in my eyes didn't let me very much. So we just sat there, being together, getting to touch each other.

My Aunt Kristen sent this little Santa hat and booties. I am so grateful she though of that!!! Neils First Christmas!

We have been blessed to be staying at the Ronald McDonald house. As Jake and I were talking about the other day. It is one of those things I have heard of, but didn't really know anything about. The house is a stones throw from the hospital which allows us to spend as much time at the hospital as possible. They do many great things for the people staying there... Liam got to see Santa one night, they always have movies etc... and most nights there are different company's or organizations who come to the house and make dinner for the residents. I know that doesn't sound like that big of a deal, but it has been for me. So many nights I have come "home" so emotionally and physically exhausted and there is hot food waiting for me. I often haven't even realized I was hungry, or honestly wouldn't make the effort/take the time to cook for myself. Anyway, we are grateful for the Ronald McDonald house. Jake told me the other day, "next time I buy a hamburger at McDonald's I'll put a dollar in the little box to donate to the Ronald McDonald House". I will defiantly do the same thing too. =)

Liam loves the stroller, and since Seattle is usually raining.. he usually looks like this in the stroller. He gets spoiled when my mom has been here and gets to go on long walks every day.

And finally our baby Neil. There is too much going on medically with him to even try to "catch up" or write it all down. This sweet boy has already been through so much in his one month of life. He takes one stride up the mountain and slides three strides down. We had a "care conference" the other day which is where all the docs from the different specialties and us sit down and discuss Neil, make a plan etc. Just to give you an idea of what he has going on we had his two NICU docs, Pulmonology, urology, cardiology, nephrology, and his PAC doc there. He has major things going on with all of those organs. We are in for the long haul.

Sean and I are hopeful for the day where we can be at home as a family of 4. When we can have both of our little boys with us. When we can cuddle and hold and treat Neil like a "normal" baby. It is so hard ... hard doesn't even begin to describe it.....

A miracle you might ask??? Why yes! Anna is actually posting something on her blog. I can't believe it's been over a year since I've posted anything here.

Sean asked me to write out an “update” on Neil b/c so many people have been asking how he is doing. First off, thank you for all the love, thoughts, and prayers.

For those of you who don’t know our baby was born a week ago today on November 29^th 2012 at 17:37pm via scheduled C-section. Prior to birth we knew he would be born with “some problems” but could not know a diagnosis or prognosis until birth. (The story of his pregnancy is a entirely different novel that maybe someday I’ll write down)

He was born at University of Washington Medial Center in Seattle and then ambulanced over to Seattle Children’s Hospital NICU. He weighted 4lbs at birth and had trouble breathing so he was intubated, he was otherwise stable. Because I had just had surgery I needed to stay at UW, but Sean was able to go over to Children’s Hospital to be with Neil. It was lonely being at UW by myself, and not being able to see or hold my baby, so when Saturday came and I was discharged I got to go over and hold my baby.

This last week has been the longest and shortest week of our lives. SO many doctors, specialists, nurses, tests, labs, x-rays, exams, pokes, doctors, specialists, nurses, tests, labs, x-rays, exams, pokes etc. We are extremely grateful for the care he is receiving, but of course it is hard to see him going through all he is going through. Day by day, anything more is too overwhelming.

So rather than me trying to explain in detail his known medical conditions I will just briefly list what we know, the internet can help you all understand the details -)

Neil has Prune Belly Syndrome there is a lot that goes on with this, I will highlight a few of the things below.

Renal function- One major factor in this Syndrome is poor to no kidney function. He has one Kidney that does not function, and the other one is doing a pretty good job. The Docs are closely monitoring function and have seen a general downward trend in is creatinine levels which is good. We won’t really know more abt. his liver function until more time has passed. It is expected that down the road (months or years) he will need dialysis and kidney transplant.

Urinary- He is unable to urinate through his penis due to suspected blockage (again we are not certain yet). He has a small hole called a urachus by his umbilicus. He had a catheter until yesterday allowing his bladder to drain, it was taken out and now he drains through the urachus. This is suspected to heal on its own. Future plans for to empty his bladder will most likely be cathedersation every 4 hours.

Pulmonary function- a day or so after birth he was breathing so well on his own they removed the intabatation tube thing. He did well on room air. But these last few days he has been breathing rapidly and working really hard to breath. They gave him a nasal cannula for a little extra help. X-rays yesterday showed that his lungs were looking worse… more like a extremely premature infant. They are now giving him “forced air” through his nasal cannula and watching his lungs closely.

Infection- He has a infection called NEC for short. It can be very serious, but for now it has not been progressing which is good. B/C of the infection he can no longer be fed (he was being fed breast milk through a feeding tube), and is on antibiotics. They put a PIC line in which is central and that way he can still be getting nutrition over the next week.

Growth/weight- This is a concern, especially with NEC and the inability to give him regular food. He has lost 16%of his birth weight. The docs are trying to give him enough, but not too much. Too much fluids could cause problems for his fragile lungs at this point.

How long will we be here in Seattle? No one knows =) weeks or months only time will tell.

Today (Dec 6^th) has been the first day where I have had the chance to hold him often. Things have literally been that crazy and busy that it has been difficult to find time to hold him. What tomorrow brings is uncertain. One day at a time is what I have to remind myself.

Physically, emotionally, mentally exhausted…. Absolutely, beyond exhausted.

Grateful we have the chance to meet Neil, Yes.

Hopeful, scared, uncertain, calm, frustrated, uncertain, about the future, about what the future holds for our little boy, yes.

I hope this is somewhat helpful bits of information for all those of you who have been asking how his is doing. There are so many of you who are concerned and it is hard to answer all of your questions individually so hopefully this is a good avenue to do so.

Much love,

Anna

Sunday, December 30, 2012

One month later

Thursday, December 6, 2012

Neil Owen Penberthy