Tuesday, July 29, 2008
In better news, A laughed for the first time. He laughed at Mutti. She was the most hilarious thing he'd ever seen. Of course, he was the best thing WE'D ever seen. It was fantastic!
Sunday, July 27, 2008
So, we know we aren't leaving here anytime before Tuesday. E probably has to go back to work before then, but I am staying out on leave until we go home. Grandpa is leaving today and Grandma (my mom) is coming this evening. Gladys misses us terribly and we're tired of sleeping on the worst couch EVER. Plus, A is getting kind of bored. Unfortunately, he's still hooked to an IV, so we can't do too much about the boredome.
Obviously, since I have the mental capacity to complain about these sorts of things,
A is healing well. We spend our days passing him back and forth for cuddles, singing songs, staring at his mobile (brought from home), and reading poetry books. A is ready for a change of scenery, but the days actually pass quickly, especially now that we feed him every 2 hours (which means we change his diapers every two hours too!)
Thank you again for all of your good hopes and thoughts. We are very fortunate to have such wonderful virtual friends.
Friday, July 25, 2008
We'll see what tomorrow brings. One day (one step even) at a time. We are making progress with ups and downs along the way. Slow and steady wins the race though, and A is an absolute super star!
Thursday, July 24, 2008
We have received word that we will liklely remove the tube from A's nose tomorrow morning. There is an outside chance of feeding tomorrow afternoon (don't get carried away now!) Furthermore, the surgeon believes that rather than starting A back on his special formula (and working up to breastmilk), we will start him back on breastmilk when we move to real food!!!! (He will have to be on pedi.alite first, then a half-strength mix, and then on to the real stuff.) This is particularly uplifting for me, as you all know I've been religiously pumping since A was born. Not sure I'll be able to supply 100%, but at this point I should be kind of close.
So, things feel like they are finally moving. We are hanging in there ok. We had hoped to be further along by now, but the excellent progress today has lifted everyone's spirits. No one is in a rush to put food down, though, b/c the surgeons don't want us to overload A's system and give us a bigger set back. So, good news around here. Thank you for all of your love and support - we needed it (and still do a bit, I'd say. We're not done yet.)
ALSO, HUGE thank you to GRANDPA who is with us for each up and down while also holding down the fort over on D Drive. Gladys is well-walked & loved; the mail is piling up on the counter rather than the doorstep, and - most importantly - Erin and I have the freedom to focus on A and his healing. THANK YOU, Grandpa!!
Wednesday, July 23, 2008
Tuesday, July 22, 2008
Erin and I just ran home for a shower, dog walk, and a run to the grocery store for snacks in our room. We're doing relatively well, and are optimistic that A will show signs of healing tomorrow.
Of course, thank you for continued support. We're hanging in there!
Thus far, we are expressly disappointed in how A's pain has been relatively neglected. The pain team has been contacted several times. After several contacts, they sent the resident up who looked at his epidural site and claimed it looked "normal". She said she's seen many with much more drainage than A's. Though that calmed us at the time, it soon became clear, as we entered the wee hours, that something was NOT normal.
This morning, the surgical team came in for rounds. They examined him and said he is looking good so far, though they didn't hear much in the way of bowel sounds (our first milestone). They were, again, made aware of A's pain situation and they agreed to contact the pain team themselves to discuss this problem. They also wrote for another medication that was explained to us like "Mot.rin". In addition, he does receive Ty.lenol by mouth every 6 hours.
Our nerves are rather rattled over here. We slept very little, taking turns working to console our little guy. The accommodations aren't exactly comfortable to begin with, but add in the stressful interuptions, and both of us are a bit on edge. He is now peacefully sleeping in Mutti's arms, and we've hit the 2 hour mark where the pain usually wakes A up, so perhaps some snuggles are helping. Soon, we're hoping to have a more effective plan for pain management in place. A deserves better than this.
Monday, July 21, 2008
E and I are about to sleep for the evening too. We've heard rounds come early in the morning, and we're anxious to get this recovery train on track. A is absolutely amazing. He is strong, loving, and incredibly beautiful through all of this. He is showing his moms how to push through difficult times and come out on top. He doesn't deserve this, but he is certainly navigating the entire experience with a resilience that I've never before seen. Absolutely amazing.
They took A this morning at about 6:40 down to surgery prep. Erin and I went with. We left him around 7:40 so that he could head to surgery. We did not hear anything until 9:30 when we learned that the surgery did not start until 8:40 since they had to anesthetize etc... He had an epidural as well as general anesthesia. He also had an additional IV put in because they can put in larger IVs when babies are sleeping as their veins are more dilated.
We received word around 10 that they were finishing up and Dr. L would be up to speak with us. He came up at about 20 after and gave us a good report. He will have to go back in about 10 days to have stitches removed. L cleared out adhesions (scar tissue) that had formed due to the blockage and surgery from before (this is normal) and then reconnected him. He has "lots of intestine" to work with, so his prognosis is very good!
We anticipated being able to see A around 1045, and were not able to do so until nearly 1130 because A had an apneatic spell when he arrived in recovery. It was an isolated incident and required that we stay a bit longer in recovery for extra monitoring, but since he is ok we are now up in our room.
A is clearly uncomfortable at this time. His pain meds have been increased and he is now resting more peacefully. I held him for a bit down in recovery, but since he is sleeping soundly now in his bed, we are letting him be for the moment. We are expecting more visits from Dr's yet today to check in on him and his pain.
Erin and I are mostly feeling relieved. When A is no longer in pain, we will feel much better, of course.
Thank you to all,
Sara, Erin & A
Sunday, July 20, 2008
- We don't have to do this, do we? We can just skip it, right?
- This means the end of the ostomy bag! No more poop bag!
- He's so happy; this seems absolutely unfair to him.
- I don't want to do it. I can't do this. I can't either.
- We can do this. We have to do this. He is our strong boy.
And so on, for 20 minutes.
Now, it's 8 hours later. Every one of those hours has flown by. A now has a tube down his nose delivering "Go Lig.htly" to "clean him out". He also has an IV line for fluids. Soon, he will receive antibiotics in the nose tube. We are able to feed him a mix of electrolytes with the bottle until 4am, so he will continually feel full. They will take him around 6am, probably. Surgery is at 730am and will last 2-3 hours. After he is released from recovery, he will come back to the room with us.
Already, much of my anxiety has dissipated. I have somehow faced many of the hospital demons that have been haunting me since this ordeal began. Now that we're here, I'm in the swing of the things. I know how this works (even though we're at a different hospital.) I know about hospital time. I know how to ask for what I want. We know how to advocate for our son. I don't like seeing the tube down his nose (and I couldn't watch them put it in. Thankfully, E was able to stay with him.) I don't like that he is not comfortable, and I really don't like the kid wailing down the hall. The demons, though - they're gone.
This stay is not like last time. There is not the same amount of unknown. No, I don't want to be here, but we are here as a family. We are going through this together, and this time I know my son. We know our son. When it is all over, he will wake up and see the parents that he now recognizes and loves. I'm still anxious about surgery, of course, but I feel a hope that I feared would not surface. We will resume our lives and truly put this behind us. I think I know that now, and it comforts me.
On the way home yesterday, a sense of what was coming hit really hard. The wedding had been quite the distraction, which was probably a good thing. It was something that we had to get through before we check in to the hospital, before A's big day tomorrow. I'm kind of glad that the wedding was this weekend rather than last, so that we didn't have as much time to sit and stew over what is coming.
Today is hard already, and it's just beginning. We are going to church and then to brunch. After that, we have to pack him up and head on in. Surgery is tomorrow morning. I feel the minutes ticking by, and I'm scared to death. I'm scared about how I'll feel seeing him, and I'm a little scared too about things that can go wrong. I don't want to have to spend time at the hospital. I don't want to be separated from my baby by tubes and wires. I don't want a tube down his throat/in his mouth/in his nose. I don't want him to have to be poked. He can't understand what's happening, and I can't explain it to him: that things will be better when this is all over.
I'm trying to see the other side, the light at the end of tunnel, so to speak. We will keep this blog as updated as possible, of course. Ugh, let this be over soon.
Wednesday, July 16, 2008
We come back on Saturday late in the evening. We will spend that evening getting ourselves ready to check into the hospital on Sunday. A has to be there for a day to clean out his intestines in preparation for surgery. The actual surgery is on Monday morning, we are not sure what time. They say it will take up to 3 hours. Following that we are looking at about 5-7 days in the hospital to be sure everything is working correctly.
I have to say, I am full of a strange feeling of excitement and dread. As I think back to his first surgery I was in such a daze that it was all happening I felt out of control. This time I definitely feel like the lead up time has allowed me to analyze and evaluate my feelings toward the surgery. So the clarity lends itself to a different mindset, however that is not the only factor. This time I actually know the kid. I mean, at two days old you are still getting over the shock of having a baby and what is expected of you. We didn’t know the little things like, he loves to have his hands close to his face for comfort. Now I know how to make him smile and laugh, when he is hungry, when he is tired, how to burp him, and much much more. I think this is what terrifies me the most, seeing him post surgery in a sedated state with a breathing tube and knowing he isn’t getting what he needs or wants. It turns my stomach.
On the other hand, I’m excited. This is the end of the ostomy bag. This is the end of fights with the medical suppliers about how many tubes of paste we can get at once. This is the end of A’s illness and the beginning of him having an opportunity to grow without (after a while) a million doctor appointments. It is the beginning of the end for special formula (hopefully) and the beginning of full breastfeeding for S. Now we will not be saying things like, “well, he has to wear a button onsie or his bag will show”. It is the start to so much. I just pray it all goes as planned.
Monday, July 14, 2008
Feel free to send me a little extra thought here and there today. I will probably need a few boosts throughout my first day back.
Thursday, July 10, 2008
The time is slipping by. So much change is afoot that all I want to do is curl up in my bedroom with my little boy and hold onto him.