No Paparazzi Please!

We have been loving Baby 4 this week! Since we don't do anything the easy way, our first week with him has been full of ups and downs. We are exhausted, but it's 9:00 and as soon as I post this, I can go to bed!

I went back and forth about posting this picture since you can't see him,
 but I swear there is a really cute child in that bed

First, the "ups". Baby 4 is ADORABLE!! He has the biggest smile and cutest tiny voice. He's also very funny and he really understands humor, so he's fun to joke with. He's also doing much better medically than we (or anyone) expected. His doctors tell me that 3 weeks ago he was sedated, on large amounts of morphine, swollen from head to toe, intubated, and being fed through a tube. There was speculation of brain damage, permanent physical impairment, a future filled with many surgeries, and a lifetime of intensive medical care. When I met him on Tuesday he was awake, disconnected from every machine, eating regular food, talking, walking, playing with toys, and helping the techs check his vitals. Right now he is being weaned off his pain meds and being decannulated from his tracheostomy. This all means he'll be coming home with no medical care needed except some wound bandaging and physical therapy!! We consulted with a plastic surgeon who said he thinks reconstructive surgery will be unnecessary in the future and that he will have flat scars that will allow him to grow and move normally. He is a miracle, and I know it is because we have been surrounded by praying people who rallied for him weeks ago when he needed healing. Another great thing is that we have met Dad, and he is very pleasant. Phew! It just makes everything easier when parents are nice. Today at the hospital, I must have looked bothered (but really I was just tired) and Dad pulled me aside to make sure that I was OK and that he hadn't done anything to offend me. Baby 4 has also been assigned a caseworker who seems very on top of things- always a plus. So to sum it up, Baby 4 is doing great, and the case seems like it will be a smooth as a foster care case can be.
What goes up must come down though, eh? The first "down" is that Baby 4 is still in the hospital even though his medical team said he was well enough to go home on Wednesday. The problem with discharge was that I hadn't been in the hospital with him long enough to be fully trained in his care. Had I been allowed to start visiting him when I wanted to (immediately), he could have been home by now. There has also been a problem with finding a local agency who can provide nursing for him at home since there is a shortage of home nurses. If he had to go home with a trach, he wouldn't be discharged from the hospital until there was at least a night nurse lined up for him. This led to the talks of taking out the trach, so I guess it wasn't all bad. While we are adding to our family with Baby 4, we are also saying goodbye to a dear man who my kids call Uncle Bill. He passed away Thursday after a 3mo fight with lung disease. Bill and Brandon had a father/son relationship for the past 20yrs and we are very sad to say goodbye. Brandon has been given bereavement time from work so he can make final arrangements. While I am still spending everyday with Baby 4, the emotional and time toll on Brandon is effecting how much bonding he can do with 4.


Uncle Bill 12/23/1933 - 3/24/2011

The other down is that Baby 4 has been in the hospital for 7weeks with no consistent caregiver, routine, structure, or expectations. That has led to some behavior issues and bad habits (like a midnight bedtime and 5+ hrs of daily TV). I have had a difficult time coming in and getting him into a 4yr old's schedule when he's used to being the boss. He also has a lot of anger stemming from the incident that caused his condition, so teaching him to manage such strong (but not unreasonable) emotions is proving to be a challenge. Today, only 4 days in, he was in PJ's at 7:00 and it only took 20min to get him to say "sorry" to Brandon for hitting him.
This case is very different for us in many ways. Baby 4 is our oldest child. He's our first "medically frail" child (said in quotes because he's really not frail anymore), and our first behavior case. I think the biggest difference is that this case has gained some very unexpected media attention. Like I mentioned before, Baby 4 has been in the hospital for 7 weeks, so no one thought this "old news" would make the nightly news. Turns out we were wrong. Brandon and I were sitting in Baby 4's hospital room on Wednesday when the hospital's social worker came in and whispered to me that Baby 4's story had been on every news station at noon. His Mom's name and picture had been shown as well as pictures and names of their apartment complex and the hospital. She said they were going to place security guards at the entrance to the pediatric unit to make sure no unwanted guests got close to Baby 4. She also said not to turn on live TV in the room because there have been frequent updates about Baby 4 on the local stations. I immediately got on the internet and saw what she was talking about. There were details about the incident and baby 4's condition as well the state of the investigation. All the articles I read and the reports I saw at 11:00 that night said that Baby 4 was surrounded by family to take care of him.

The general rule in foster care is that you never identify yourself as the foster parent in front of the child because it breaches confidentiality and shares too much of the child's information unnecessarily. The exception to the rule is in the hospital where no one will tell you anything about the child unless you have a reason to know- like being his primary caregiver. I've had to identify myself to every hospital staff person we've seen  before they'll talk in front of me. So when a man came to Baby 4's room on Thursday evening wearing a hospital ID and claiming to be clergy looking for the guardian of Baby 4, I told him I was the foster parent. He said his church had seen the news and contacted the family who asked for help from the church. He has connections to a prominent children's hospital out of state who agreed to airlift Baby 4 that night and pay for his medical care. He asked how Baby 4 was doing, and seemed annoyed that I would only give him the standard "He's in stable condition" response. He called Baby 4 by his first name which was red flag because no one uses his first name, he goes by a nickname. If this man really had spoken to the family, he would have known that. The next sign something was wrong was when he asked to take a picture of Baby 4. I told him I could not allow that and asked that he direct all questions to the caseworker. I asked him for his name, his churches name, phone number, etc and told him I would have Dad call him. As soon as he left, I told the hospital social worker what happened . She assured me that she would find out what was going on and it would not happen again. They flagged baby 4 as a "no information patient" which means if someone calls the hospital or comes in and asks about Baby 4 the hospital can't give out any information including room #, condition, or even if he is still in the hospital. They also started stopping everyone who came into the unit and made them be cleared to visit by me or Dad before they were let in the room. Unfortunately some damage had already been done. By 10:00, this man was on the local stations promoting his church and the out of state hospital and talking about all the medical expenses he is paying for ($0 since kids in care are fully covered by Medicaid). He tells the reporters that he is close to the family and has seen Baby 4 who is getting stronger everyday and will soon be taken out of state. He also uses Baby 4's name when talking about it.

I had wondered coming into this case if I could love an older child as fast and deep as with my babies. When I saw that "Reverend" using my son's trauma to get 15min of fame, I could have ripped his heart out with my bare hands. I felt like the vampires in the Twilight movies when they crouch down and show their teeth while protecting the vulnerable human they love. Good to know there's no problem bonding to a 4yr old as opposed to a baby.

When Baby 4's uncle came to visit him at the hospital today, he told me the news stations have been calling him to give a statement about his condition. The TV is on while I type this and I see a woman being interviewed who hasn't been to the hospital to visit Baby 4 at least since I've been involved, but says she's his cousin who is very close to him. She's detailing who he lived with and when since he was born and giving her opinion about what happened to him.

The public is intrigued by what will happen in his story, and I don't know how that will effect the case. Hopefully the media will get bored and move on. The news coverage doesn't effect how I will parent, but I'm nervous it will effect how he is seen in the community. There were so many details shared about him in the media, anybody who sees his scars will know he's the kid on the news. I also wonder how he'll feel about the sensationalism in the reports that are coming out now as he gets older. Some articles say that he is "disfigured", which is grossly untrue, and his Mom is called a lot of terrible things. Will he want to see these? Should I save them, or is it better to hide the media aspect of his case so he's not hurt or confused by the untrue assumptions or negative language used when talking about his family? I've decided to save the articles I have, but keep them somewhere where he won't accidentally find them.

Tomorrow I'm doing a 24hr visit at the hospital where I'll care for all Baby 4's needs while being observed by the nurses. I've been doing most of his care anyway since I've been with him 9am-8pm since Tuesday. I do think it'll be good for us to be together for a full 24hrs before coming home though. If the nurses sign off that I am capable and confident, We'll be bringing him home!! I better get some sleep tonight, because soon I'll be back in full Mommy mode!