I blame in on being a big sister. It all started with bossing my little brother around. I had control and I loved it! I became an obsessive compulsive (and proud) news producer who wanted control of that entire newcast... the line-up, the timing, the look, everything! Next, I was a wife and mother who thrived on the organization, scheduling and craziness of a family. My first priority has been the kids. (and Troy of course, but throw him some Cheez-Its and a few gummy bears and he's happy) I shuttle, schedule, clean, dress, play, teach and try to make their lives the best possible.
Then came Max. The hardest thing, since my water broke on April 14 was relinquishing complete control, of almost everything! I couldn't stop my body from laboring, I couldn't stop Max from coming early, I couldn't make him healthy, I couldn't care for him, I couldn't feed him, I couldn't hold him, I couldn't take him home, I couldn't do much of anything... except watch, wait, hope and pray that someday I'd get that baby I'd carried for the last 6+ months. That's what I'm still doing.
Most days, it's agonizing. Max's life is in the hands of people I didn't choose, didn't know before he was born. Some of them, we've come to know pretty well, and they've come to know Max. But, we meet new people everyday, and it's hard for me to just hand over care of my precious boy. Do they know him, do they anticipate his needs, will they comfort him, are they responding to his cues. Are we doing everything possible to get him the best care possible? Should we do more or something different?
I can't even tell you how many doubts this raises for me as a mom. It's just not natural. If Max were a normal, full-term, healthy baby, he'd be at home with us now. I'd be taking care of his every need (with Troy's help of course) and we'd be able to hold him, touch him, bond with him at our leisure. Instead, I ask to touch him, schedule holding him and changing his diaper, offer to do anything else they'll let me to care for him, and since he can't eat yet, I pump what I can and hope that someday I'll get to feed him.
I don't think you can explain this to someone who hasn't been through it, but it's weird, awkward and painful. It's un-natural for a mommy. I think it's un-natural for our family as a whole. Ella is upset and sad, because she wants to hold Max. She needs to hold her baby brother, just like she holds Sophie's baby brother. She begs us to go and get him and bring him home right now. I asked about it at the hospital today, and we are going to be able to arrange for her to sit with me sometime soon, while I hold Max and help me love on him. Once he's off the ventilator, maybe we can arrange for he to sit on my lap and hold her brother. It's something she's been wanting to do since she found out I was pregnant. It's hard to explain to a 4 year-old why that can't happen. To her, it's just so devastating.
This is a phase of our lives that's put every one's plans and dreams on hold.... and I'll be glad when it's over.
Wednesday, June 9, 2010
Catching some Zzzzzz's...
Mommy needed a nap today, so I left the hospital just a little early and came home, by myself for a quick snooze on the couch. Ella was with my friend Jamie and her girls. Alex was at Laura's and Troy picked him up for me. It was 45 minutes of much needed slumber!!!
I was back up at the hospital early this morning (2-4 a.m.) because Max was NOT liking his new vent settings, and he may have been having some withdrawal issues now that his morphine pump is gone. It took a quick change of the vent and an order for scheduled morphine shots to put the boy right back on track.
He was doing quite a job of filling his ostomy bag with air today. Guess where that came from? (toot toot toot) The surgeon was quite pleased to see that development when he stopped by to check on Max. He even mentioned that Max might be able to start on the VERY small feeds in a few days. It's scary, to think of putting anything back in those troubled bowels. But, we wont' know if we don't try, and that was the goal of this very scary surgery, to get him eating!
He continues to grow and shed some of the fluid from his very puffy, post surgery scare. Most importantly, he spent another couple of hours on top of Mommy this afternoon. Those are always the best hours of my day. I know where he is, I know he's safe, and I know he's with me, feeling my love. I can't do much for him, but that skin to skin snuggling time sure does a lot for me.
I was back up at the hospital early this morning (2-4 a.m.) because Max was NOT liking his new vent settings, and he may have been having some withdrawal issues now that his morphine pump is gone. It took a quick change of the vent and an order for scheduled morphine shots to put the boy right back on track.
He was doing quite a job of filling his ostomy bag with air today. Guess where that came from? (toot toot toot) The surgeon was quite pleased to see that development when he stopped by to check on Max. He even mentioned that Max might be able to start on the VERY small feeds in a few days. It's scary, to think of putting anything back in those troubled bowels. But, we wont' know if we don't try, and that was the goal of this very scary surgery, to get him eating!
He continues to grow and shed some of the fluid from his very puffy, post surgery scare. Most importantly, he spent another couple of hours on top of Mommy this afternoon. Those are always the best hours of my day. I know where he is, I know he's safe, and I know he's with me, feeling my love. I can't do much for him, but that skin to skin snuggling time sure does a lot for me.
Tuesday, June 8, 2010
On the right track
Max is back on his pre-op ventilator settings. He may lose his morphine drip later today. So far, he seems pretty pleasant.
He did gain weight again, probably from medications and the blood transfusion. But, the doctor wants to get some of that extra off, so they are limiting his fluids for a couple of days and he is back on Lasix.
Mommy is learning how to care for the ostomy bag today. This will cover his stoma and basically, collect the poop that comes out of his belly until his second surgery in a few months. It's important that Troy and I know how to care and change the bags, since he could come home with the ostomy, and then come back several weeks later for the final repair surgery to his bowels.
I should be able to hold him this afternoon for the first time since surgery. Doctors says it will help him to be upright, and snuggling with Mommy! Yippee!
He did gain weight again, probably from medications and the blood transfusion. But, the doctor wants to get some of that extra off, so they are limiting his fluids for a couple of days and he is back on Lasix.
Mommy is learning how to care for the ostomy bag today. This will cover his stoma and basically, collect the poop that comes out of his belly until his second surgery in a few months. It's important that Troy and I know how to care and change the bags, since he could come home with the ostomy, and then come back several weeks later for the final repair surgery to his bowels.
I should be able to hold him this afternoon for the first time since surgery. Doctors says it will help him to be upright, and snuggling with Mommy! Yippee!
Monday, June 7, 2010
We interrupt this crisis...
Time for some news from the rest of this family, our other two kiddos are alive and well and not getting enough attention from Mommy and Daddy, but we're trying.
ELLA GETS HER DANCE ON
We all took a break yesterday afternoon to watch Ella in her dance recital and the end of first year in the mini company at Starstruck Dance. She was wonderful!!! She has learned so much this year and my, how she's come out of her shell!!! She swing those hips and sassy walked onto the stage for "Wait a Minute Mr. Postman." We could not have finished this dance season without help from Laura, who helped get Ella ready for class every week, and most importantly, the Boetcher family.
Thank you to Kate, who picked Ella up for class
every week and brought her back to Laura's house. Thank you for letting her stay over, doing her hair and make up, getting her to and from the recital and competitions. Thank you for entertaining her, treating her like one of your own, and making her feel so comfortable that she stayed away from us for almost 3 whole days!!! We are so grateful for your help and so happy for Ella. She really enjoyed this dance season!
ALEX GETS HIS GUNS
Then there's Alex. He spent Friday night at Laura's so Mommy and Daddy could stick with baby Max at the hospital. I can't even start on how much Laura and Josh are helping us out. That's another post entirely in the weeks to come. Alex is really enjoying his new friends and playtime at Laura's and he's trying to embrace potty training... but not really.
His favorite thing about having a new baby... his guns. I'm just not going to say anything else about that. The picture says it for me.
GROSS OUT ALERT! Post-op photos
This is Max loaded into his portable isolette (they call it the GlobeTrotter) it's equipped with a ventilator and monitor on board. He's headed down to surgery with his full medical team and Mommy is crying!
This was our first look at Max when he returned from the OR. He was bruised, and a little puffy, but mainly just still. The anesthesia paralyzed him so he could not move for at least an hour after he came back up to his room. The board on his left arm is holding his wrist in place for an IV. he has another IV line in his left leg and during the surgery, they placed a Broviak long term IV port in his right leg. That's mommy's hand holding his head, which usually comforts him. He took the blue "blankie tag" on his head to surgery with him and had it on his head when he came back. It was a gift from big sister Ella and I sleep with it once a week after it's washed, so it smells like Mommy.
This is Max's incision across his belly and on the left you can see the stoma. That is basically a section of his intestines, snipped in two and now both ends are on the outside of his body. This allows the poop that he makes to drain outside his body, a bag will be stuck on, kind of like diaper to collect the poop. It's called an ostomy bag. This will allow Max to grow stronger and the intestinal tissue to heal as much as possible. The surgeon, in a few months will perform another surgery to sew these two ends back together for one healthy bowel.
This was Max on Saturday, one day after surgery. He is so swollen and bloated. His eyes and mouth are swollen shut. You can see his incision and his stoma is covered with Vaseline gauze, which keeps it moist so it doesn't stick and heal shut. You can also see the smaller incision just above his diaper. He has a matching incision on the other side of his body. These are where the drain was in place for the past 6 weeks, allowing poop which leaked into his abdominal cavity to drain out, until he was strong enough for the bowel surgery.
These photos are scary to look at, but this is our new normal these days. We took the photos to keep for Max to see someday. He'll have these scars from his Broviak IV line, Penrose abdominal drain, exploratory incision and stoma, as well as the heart surgery scar which is on his back. We hope Max will be able to look at them someday and realize how far he's' come and how gorgeous those scars are to us. They're reminders of all the surgeries to keep him alive!
Turning things around...
Sorry I couldn't post yesterday! Something was wrong with Blog.spot.com...
Max is turning things around. He gained more than a pound in just a day, which was all fluid that his body couldn't flush through, that was Saturday night, now he's peeing buckets, and should be back to his actual weight soon.
His blood pressure was extremely low, but now that's back up to a normal range.
His pH levels in the blood were too low and now those have stabilized.
His stoma (intestine drain outside his tummy) is starting to drain little bits of POOP!!!! WOOHOO!!! The surgeon stopped by and was pleased with how the incision and stoma are looking. Once Max stops having green bile coming back up from his tummy, they'll be able to start trying small bits of Pedialyte through his feeding tube again.
All good things. Most importantly, his eyes are un-puffy enough to be open again! He's being weaned off the morphine, so he was awake and alert for most of the day. He watched me, smiled at me, grabbed my fingers and let me rub his little head for as long as I could. I was even able to lift and hold him in my arms for a few minutes, while Charlotte changed out his bed!!!
One concern we're still watching is the NEC. (necrotizing entercolitis) The surgeon says as well as Max's surgery went, he can't rule out that part of Max's bowels which were stuck together and the site of his perforation may be NEC. Because of that, he'll be VERY cautious and slow with the feedings. Any overload, could cause another perforation for Max and we'd be back at square one.
Max is turning things around. He gained more than a pound in just a day, which was all fluid that his body couldn't flush through, that was Saturday night, now he's peeing buckets, and should be back to his actual weight soon.
His blood pressure was extremely low, but now that's back up to a normal range.
His pH levels in the blood were too low and now those have stabilized.
His stoma (intestine drain outside his tummy) is starting to drain little bits of POOP!!!! WOOHOO!!! The surgeon stopped by and was pleased with how the incision and stoma are looking. Once Max stops having green bile coming back up from his tummy, they'll be able to start trying small bits of Pedialyte through his feeding tube again.
All good things. Most importantly, his eyes are un-puffy enough to be open again! He's being weaned off the morphine, so he was awake and alert for most of the day. He watched me, smiled at me, grabbed my fingers and let me rub his little head for as long as I could. I was even able to lift and hold him in my arms for a few minutes, while Charlotte changed out his bed!!!
One concern we're still watching is the NEC. (necrotizing entercolitis) The surgeon says as well as Max's surgery went, he can't rule out that part of Max's bowels which were stuck together and the site of his perforation may be NEC. Because of that, he'll be VERY cautious and slow with the feedings. Any overload, could cause another perforation for Max and we'd be back at square one.
Saturday, June 5, 2010
Day 1post-op
Max is struggling today and it's painful to watch. He is very bloated and swollen. His body is retaining acids in his tissues, he is basically inflamed all over because of the stress of the surgery on his body. It is taking a toll on him, his heart is smooshed by all the swelling and that is keeping his blood pressure really low, so his circulation is poor and his body is being deprived of enough oxygen. His kidneys work just fine, but his body is not getting the waste washed out so it's building up???
That's what I understand from what the doctors are telling me today, but they don't seem too alarmed. They say this is normal after such a major surgery for anyone, especially for a baby this small. I came back last night just before midnight when his blood gasses started to show signs of a problem and his blood pressures dropped. I was here until about 2 when things stabilized a bit. The neo-natologist was in the hospital with Max as well.
This morning the surgeon saw Max, checked out the incision, his stoma site and says from a surgical standpoint, everything looks good and he's pleased. Now it's just the post-op recovery that a problem.
The doctors and nurses are doing their best to treat the symptoms that Max is showing from the stress of the surgery. They told us the first 24-48 hours can be very rough and they hope things will level out within the next week. We cannot hold him. He looks like an over-ripe tomato that's ready to pop! He holds my finger if it put it in his palm and grabs tight, but his heart rate also rises, so it seems to be painful for him to move even the tiniest little bit. He is on morphine, for the pain, a drip and shots of morphine every 2 hours. He is getting dopamine to help bring his blood pressure up and he's getting two other medications to help with the acid build up. He's also on 2 antibiotics. LOTS of drugs, but so far, still a critically ill little man. They have put in a catheter to help him so he doesn't have to worry about the stress of emptying his bladder. (who knew even peeing yourself was stressful for a preemie?!)
I am with him all day today and tonight if needed. We hope to have the kids back home with us tonight, because this is stressful on them as well and we all need some time as a family, as long as Max is stable. Keep the prayers coming, Max is hanging in there!!!
That's what I understand from what the doctors are telling me today, but they don't seem too alarmed. They say this is normal after such a major surgery for anyone, especially for a baby this small. I came back last night just before midnight when his blood gasses started to show signs of a problem and his blood pressures dropped. I was here until about 2 when things stabilized a bit. The neo-natologist was in the hospital with Max as well.
This morning the surgeon saw Max, checked out the incision, his stoma site and says from a surgical standpoint, everything looks good and he's pleased. Now it's just the post-op recovery that a problem.
The doctors and nurses are doing their best to treat the symptoms that Max is showing from the stress of the surgery. They told us the first 24-48 hours can be very rough and they hope things will level out within the next week. We cannot hold him. He looks like an over-ripe tomato that's ready to pop! He holds my finger if it put it in his palm and grabs tight, but his heart rate also rises, so it seems to be painful for him to move even the tiniest little bit. He is on morphine, for the pain, a drip and shots of morphine every 2 hours. He is getting dopamine to help bring his blood pressure up and he's getting two other medications to help with the acid build up. He's also on 2 antibiotics. LOTS of drugs, but so far, still a critically ill little man. They have put in a catheter to help him so he doesn't have to worry about the stress of emptying his bladder. (who knew even peeing yourself was stressful for a preemie?!)
I am with him all day today and tonight if needed. We hope to have the kids back home with us tonight, because this is stressful on them as well and we all need some time as a family, as long as Max is stable. Keep the prayers coming, Max is hanging in there!!!
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