Early this morning Spencer's bowel did perforate and he was transported via ambulance to another hospital in Fort Wayne. Artie rushed home to get Avery and I and we headed to the hospital. I can't even describe the feeling. My beautiful boy has been through so much, why did he have to go through surgery? Just last night, the neonatologist and the pediatric surgeon said his xray showed a great amount of improvement and that he wouldn't be needing surgery...they were completely shocked by what happened too. I'm pretty much having an out-of-body experience right now. Knowing that my 9 day old baby just went through a serious surgery to fix a serious life and death issue makes me question the fairness in this world.
I'll try to sum it up as best as I can...they went in and took the intestines out to see where the bowels were damaged. He had a small section of his bowel removed, luckily it was a part that only stores waste and won't impact him later on. He does have 2 stomas (openings outside the abdomen). One is for waste out of the small intestine and the other is for mucus and secretions out of the damaged part of his bowel that wasn't removed. He has these so that any food he eventually eats bypasses his bowel so it can heal. In 4-6 weeks, hopefully once the bowel has healed, he will have another surgery to reconnect the bowels. We have been told that some of his bowel tissue will grow back since he's an infant and he won't have any lasting effects. At the time of the second surgery he will also have a hernia repaired (that was caused by the air getting into his abdomen). He is on a respirator because of the pain medicine they have him on and hopefully that will come out in a few days. He is on 14 days of antibiotics, just in case. If all goes well in the next couple of weeks, we may be able to bring him home before his second surgery. We will have to learn how to change his ileostomy bag, but if that means having my baby home I will do anything. Hopefully his second surgery will be outpatient so he would only be in the hospital for the day. We don't really want to get our hopes up for anything right now because everything that has happened to him has been rare or shouldn't have happened. His type of blood intolerance-rare. His high bilirubin at birth-rare. His exchange transfusion-rare. His bowel surgery-rare (for a full-term baby, only 5% of these cases typically need surgery). I don't know what bomb is going to drop next.
Artie is going back to work this week. It is going to be challenging. Luckily, we do have a lot of people willing to help us now. The hospital we were at was only about 10 minutes from our house. Now, the hospital he's at is about a half hour from our house. Just another adjustment that we have to make. This hospital's NICU also has different visitor rules-very confusing-but Avery is not old enough to visit, so she won't be able to see her brother for at least 2 weeks. She calls for him all of the time and this is a pretty tough thing to have to deal with on top of everything else.
We do say how lucky we are to have such wonderful friends and family (even people that don't know us, fellow NICU parents, co-workers of friends and family, etc.) out there thinking of Spencer. We know you all are keeping our boy with us. We have nearly lost him 3 times in his short life and we thank all of you for helping him (and us) through.
Right now, we just wait. Everyday we pretty much start over. He seems to have handled the surgery well, so far, but we are by no means out of the woods yet. I hope that from here on out we are on the climb back up to feeling as wonderful as the moment he was born.
On a completely different note, I want to congratulate Cindy for joining the blog world. I haven't had time to check any others blogs or leave comments (I'm hoping to really soon-I miss keeping up with all of you), but I did manage to see that she has her blog up and running and has pictures of her beautiful boy (of which I think looks like his daddy...). I am dreaming of the day when my boy can meet Mister Colten:) Thank you everyone!
8 comments:
You don't know me, but I'm a friend of the SMC nurse crew. I've been following your story and I'm praying for Spencer and for your family. I am so sorry that your family is going through this. I hope that Spencer is home soon and that this is the last of his health issues. He certainly has two parents and a big sister who love him very much.
Katie Jeter-Boldt
Gosh Steph- right now I just feel a little angry too. You all were there to support us during Luke- wasn't he the lesson we all needed to love each day, and to cherish each day? Now Spencer is showing us again, how precious life is, and he is also showing us what a fighter he is....
We love you all very much! I am so glad the surgery was a success, and that he is comfortable.
Please let me know if there is ANYTHING we can do- you are always more than welcome to call to vent or cry. I understand the anger and sadness all too well.....
Keep the faith- Spencer has earned the nickname "Strong Engine". What an amazing little boy!
That just sucks- I really don't know what else to say. Thank God he made it through the surgery, and hopefully things will be looking up in the next few weeks. I'm sure Janelle will agree with me on this- at work, you take care of SO many kids that have undergone bowel resection and the like, and each case is so sad, but you see it in an entirely different light when the patient is someone you love and care about so deeply. I'm sorry you guys have to go through this, and we are praying for continued strength for you, Artie, Avery, and of course, Spencer. He is definitely one strong little boy:)
Love,
C:)
Steph,
I cannot believe all the tradegy. I am so sorry. It's so weird hearing you say that your little one is going through the trauma I see everyday in the NICU. But let me tell you - Hearing it from YOU makes it so incredibly (more) devastating. I cannot put into words how sorry I am to hear that Spencer is on a ventilator and now has pouches for his bowel. How awful to see your own Little One go through this. But I DO know that you are a great mother and Artie is a great father and you both will handle this so strongly for the sake of Spencer. I pray that the next few weeks go by quickly and that there is no more bad news. My prayers are with you. God bless you! And may Avery soon know her little brother in the home-setting :)
Love you always,
Janelle
p.s. call me if you need anything, as a friend or as a NICU nurse
I am so sorry to hear that Spencer had to have surgery. Thank goodness you have a fighter on your hands. I hope his recovery is fast and smooth. We are praying for you guys everyday. Please let me know if there is anything at all I can do for you guys. Lots of love, Nic and the gang
Hi Steph, I'm sorry to hear about everything your family is going through. Spencer is such a tough little trooper, and he's lucky to have such strong, loving parents. We continue to keep you in our prayers and look forward to hearing about Spencer coming home.
Carol
We are praying for you really hard here Steph!!! We are storming heaven for Spencer! I am so sorry that you have had to go through all that you have- you are right- it seems so unfair and is- I think you have every reason to be angry. I hope things start to turn the corner for you guys!!!
Really-thank you so much everyone. Reading your messages and positive thoughts for Spencer has me tearful-but in a way that makes me give great thanks for the wonderful people we are lucky to have around us. Thank you, thank you, thank you!
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