Medical Update

Daddy Chris here to give you an update on all that has happened to Bennett over the last week (because somehow I've managed to remember most things that have happened).

When Bennett was born Wednesday night the doctors and nurses in the Brigham NICU were very pleasantly surprised with how pink he was and how good his blood oxygen levels were given the severity of his heart defect.  They did all the normal things for a new baby-weighed him, put the ointment on his eyes, etc.  During the time that they were doing their thing a cardiologist from Children's was talking to me about the heart defect that Bennett had.  None of what he told me was new, but it served to make me focus on what he was saying instead of worrying about what the others were doing.

Once they got through there checklist he was moved over to Children's.  Chris and I had discussed earlier in the evening about whether they would use the same bridge that everyone uses or if there was some other way to transfer patients.  Turns out they use the same bridge.  On the way over the bridge the cardiologist from Children's pressed his ID badge against the card reader and the door opened.  While we waited for the rest of the caravan I asked him how I was supposed to get back to the Brigham.  He looked at me kinda funny and I said

"You used your ID to open the door.  I don't have an ID that opens the door.  How do I get back?"

Pauses...."I don't know.  Maybe the ICU nurses will know how to do that."

Let me just say now, the CICU nurses at Children's are the greatest.  From the time I walked into Bennett's room there was a nurse there explaining exactly what they were doing, making sure the 3-4 doctor's who came in knew that I was the Dad, made sure everyone knew that he had a name and what it was, and was so calm about it that I just relaxed.  The Brigham NICU people seemed to be in a rush.  All of the Children's doctors and nurses seemed very calm.  Each doctor that came in the room took a few minutes to introduce themselves and chat with me before leaving again.  Liz, the nurse that was with Bennett his first night was great.  She explained everything that the others were doing and when the commotion had died down took the time to explain what all the numbers on the screen meant and what they should be, what the next steps were going to be, and then very politely said he was in for a long night and I should probably go see how Chris was doing.  She then found a security guard to escort be back across the bridge to the Brigham.

At 4am Thursday morning, the phone rings.  They are going to put Bennett on some drugs that will make him paralyzed and painless.  I asked something to the effect of should we come over and he told me that there would be a lot of people in the room.  We discovered this is polite doctor speak for "don't come over here right now."  When we went to see Bennett later that day he was completely immobile and had many tubes and wires all over his little body.  The doctor came in and said that they were going to have to do surgery as soon as the surgeon finished with his current operation.

This is when the people started showing up.  The anesthesiologist showed up to explain what they were going to do and then we had to sign the consent forms.  Later a second anesthesiologist came in and said the same things.  Then the cardiologist came in and explained briefly what they were going to try.  Later the surgeon came in when he had finished his other surgery and explained exactly what he was going to do.  He told us that they were going to try tying off the ductus arteriosus and seeing if that worked before permanently closing the ductus.  He said once they tied it off they may have to wait 2-3 hours before they could determine if it worked.  This would mean that Bennett was on the table just being watched.  If that didn't work they would attempt to separate the tricuspid valve from the wall of the heart and possibly repair or replace the pulmonary valve.  All this was expected to take at minimum 6 hours.  Then the nurses started coming in and re-explaining everything.  Somehow the two of us held it together.

At 1o'clock they were ready to take Bennett down for surgery.  We were offered the chance to kiss him and hug him.  Up to this point we didn't know that we could kiss him, so we both declined.  When they wheeled him out of the room, I started crying.  We stayed around for about another 10 minutes and then made our way back to the Brigham to wait.

At 3:20 I received a call saying they had made the first incision at 3o'clock.  The next call would be when he went on the heart bypass machine.  I went to take care of some paperwork at Children's and missed a call from the surgeon.  At 4o'clock they had finished the surgery.  Closing off the ductus had had such an immediate effect that they didn't need to try anything else at that time.  Later that evening we went to see him.  This was when the anesthesiologist told us that he had the most lines in the hospital.  The cardiologist came by to visit and tell us how the surgery went.  For the time being his lungs were getting the blood they needed.  It wasn't flowing in the proper way, but it was getting there.  We stayed for a little while longer that night.  The nurse told us that the first 12 hours after heart surgery are the most critical, with the 12th hour being the absolute most critical.  This timeline made 4:30am the critical hour.

The next morning I woke with a start, looked at the clock and realized it was 6am.  I looked at my phone and realized no one had called.  The critical hour had come and gone with no phone call.  I called my parents who were driving up from Georgia and told them the good news.  When we arrived at his room that morning the nurse told us that he had had a very uneventful night.  His blood pressure dipped around 3am but obviously not enough to warrant a call.  He had made it past a very critical stage.

The next few days saw lots of little changes.  He was very swollen from the surgery and the extra fluids they were pumping into his body.  However, he was peeing like a champ which was helping to get rid of the fluid.  As part of the surgery they hadn't closed his chest.  They put a green membrane over the opening that was sutured to the surrounding skin.  This allowed room for the impending swelling and gave them quick access if something should go wrong.  Before the surgery they offered to show us another baby in the unit with a similar membrane, so that we wouldn't be shocked when he came back.  We said no.  We could have seen a hundred babies that had had their chests opened this way and it wouldn't have prepared us for seeing OUR son with his chest open like that.  At this point he had at least a dozen pumps that were giving him controlled doses of medicine.

Saturday saw him with a few less pumps and lines.  Sunday was a status quo day.  At some point we brought in a blanket and Paddington Bear to put in his bed.  We started adopting the policy that no news is good news.  When we arrived in the morning the nurses would give us a very thorough update of how Bennett had done overnight and what was expected of him for the day to come.

On Monday we decided to run some errands on our way to the hospital, so we got there a little later than normal, probably around 1 or so.  Chris had to go pump again.  I feel bad because whenever we're there, she has to spend so much time pumping and I get to spend time with Bennett.  I know this will change once he comes home and I go back to work, but right now I feel a little guilty that I get more time with him.  I've also discovered that I really only talk to him when there is no one else in the room.  These are mainly lectures on how he really has no choice in the matter, he's going to get better.  We brought a book from Chris' Shower to read to him but didn't get the chance.  I picked "The Little Engine That Could."

While Chris was away pumping on Monday, the cardiologist came in said they were going to close up Bennett's chest.  They felt he had done well and saw no reason to leave it open longer.  Within the hour they would come in and close him up.  This was at 2pm.  By 5pm they were just getting ready to sew him shut.  We stayed until a little after 5pm and then headed home for my birthday dinner that my dad was preparing.  Again, no news is good news.  At 8pm that night I called to find out how Bennett had done, the nurse told us that everything had gone perfectly.  They didn't even have to adjust his meds, and his blood pressure was nice and steady, which was a major concern.  Quite possibly the best birthday present I will ever receive.

When we went in to see him this morning, the first thing we both noticed was that we could see a lot more of him.  Overnight he had lost quite a few of his lines.  And his hands were now visible since both IVs had been removed.  We were also told that they had stopped the medication that was making him immobile.  This drug takes quite a while to get out of his system, but it meant he would start to open his eyes and maybe move a bit.  We were happy to touch his new found hands.  After he had his diaper changed we put on some socks that we brought from home.  They go pretty much to his knees.  And we put a hat on him.  I was so scared to move his head that the nurse had to lift up his head so that I could put the hat on.  Again, the hat is way to big for him and it was the smallest we had.  Around 1pm Kelly showed up and we went to look at Bennett again.  I noticed that his eyes were open a little wider than before.  As Chris went to get the camera, he closed them.  We got very excited that he was opening his eyes.  We stared at him for quite a while as he tried to open and close his heavy eyelids.  For Chris, who hadn't seen him move at all, this was wonderful.  Later when Uncle Andrew and Aunt Gentry stopped by, Bennett entertained us by opening his eyes very wide and then closing them again.  I put my finger in to hold his hand and two of his fingers twitched.  The paralytic was starting to wear off.  Hopefully tomorrow he'll be more responsive.  They also stopped his Fentinol, which is his pain medication.  So from Friday having a dozen pumps, he now only has 4, and one of those is his Lipids (yum, fat).

So now it's all about meeting goals.  He needs to be weened off the Nitrous Oxide which is helping his lungs, the breather which is breathing for him (this was needed while he was paralyzed, but should be less needed as he becomes more active), and start taking breastmilk through a feeding tube, ultimately moving to at least a bottle if not breastfeeding.  Once he does all of these things he may be allowed to leave the Cardiac ICU and go to another wing on the same floor.  But leaving the CICU is one step closer to coming home.  He will need more surgeries to fix his heart fully, but the doctors hope that it will be months, years or even a decade before they have to do that surgery.  But they just don't know.  The longer he is out of the hospital and growing, the greater their chance of success with later surgeries.

The nurses have told us from the beginning that they are the most expensive babysitters Bennett will ever have.  I would gladly pay every penny the day he comes home.

Tough day for Mumma

Yesterday was a tough one for me- both physically and mentally.  In general, my recovery process has been going swimmingly.  I've been up and walking- perhaps even for longer distances than the nurses may like, but I've felt ok.  A little sore, but not so bad.  In fact, Friday night and Saturday morning I started to cut down on some of my doses of meds.  Pain hasn't been so bad.

Thursday and Friday mornings after waking we would make our way "quickly" over to Children's to see Bennett.  I put quickly in quotes because we found that between when we wake up and when we can leave, it seems to take 2-3 hours.  Pumping, showering, ordering food and eating, and speaking with the nurses takes a while!  But yesterday we decided to take it a little easier.  We knew we'd have a lot of visitors today over at Children's, so we spent some more time gathering some things together so that we could rest at Children's- laptop, magazines, etc.  By the time we headed over it was probably 11:00 or so.

We got there and had a little bit of time to get updated on how Bennett's doing.  And I went to pump.  Bennett's first visitors of the day were Uncle Andrew and Aunt Gentry.  Unfortunately they didn't get to stay long.  The nurse was going to remove some of Bennett's lines and wanted us to step out while she did this.  Since it was after lunch time by this point, we headed down to the cafe.  While there, Grandma and Grandpa Tedford arrived.  We all chatted for a bit and then Andrew and Gentry had to leave for a wedding that they were going to.  I felt bad that their visit with Bennett was so short, but there will be plenty more opportunities.

A short while later Mel arrived.  She seems to have a knack for timing her visits when I'm pumping. :)  When she came by on Friday I was just finishing up, and yesterday I was just starting.  She got to visit with Bennett, Daddy Chris, and the grandparents while I pumped.  Unfortunately her visit was probably cut short by my clumsiness. 


I  had been at the sink washing my pump parts.  As I turned to walk to put the parts away, the leg of my pants got stuck on the footrest of the wheelchair and down I went.  According to those who saw, it was a very graceful fall.  Bennett's nurse had stepped out of the room, but another nurse came over to make sure I was ok.  When Ben's nurse returned she told me I had to go get checked out.  I was going to go anyway, but she was pretty insistent that I go in the next 20 minutes.  So everyone took this as their cue to leave.  Mel headed home and the grandparents headed back to our house.

Chris and I headed back to the Brigham.  Although I had walked over to Children's in the morning, we had brought a wheelchair in case I needed it.  I needed it to get back!  I'll admit it, I was in pain.  Part of the pain was probably just due to the fact that I was overdue to take my meds, but other pain was fall related.  When we got back to my room we had a nurse come in and check me out, and she had a doctor come by who asked me a few questions as well, just to be safe.  All looked good, but I was sore.  And tired.  I lay in bed for a while until we got a call that Chris' co-worker Leslie had arrived.

I briefly thought about just staying at the Brigham for a little while longer, but ultimately decided to go back to Children's with Chris.  We were talking with Leslie, and Chris was going over some of the details of what had happened to him over the past few days, and that's when I had the realization that Chris had been able to see Bennett move.  All I've seen is Bennett in his sedated state.  Realizing this brought the first tears of the day to my eyes.

I think it was also around this time that I was realizing that I have very little idea of what's going on with my son.  The doctors and nurses tell me, but most of the time I'm only half aware of what they are saying.  The other half is usually zoning out into some sleepy state.  Or, I also feel like I'm not there very often as I'm off pumping.  I understand the logic behind all of this.  I'm tired and I need to pump, but there is certainly Mummy guilt in the fact that I don't know what's happening.  (Because of this, at least for the near future, Daddy Chris is going to have to be the one to update you on Bennett's medical condition.

Shortly after Leslie left, Grampa Jerry and Nana Liz came by.  Since pumping is my life these days, I headed off to pump.  In general, pumping has been going ok.  Friday night I was feeling as if my milk was starting to come in.  However, the pumping session prior to this one hadn't been great, and this one was very frustrating.  My breasts (especially the right one) were rock hard.  I pumped, and had great results on the left side (15ML) but only one ML on the right side.  And I was still hard.

When I got back into the room I think this hit me.  I started crying.  Kind of hard.  We needed to eat, so Dad and Liz took us out to Bertucci's.  It was nice to get out of the hospital.  It was gorgeous out!  Just the perfect temperature.  However, when we got there I was still feeling overwhelmed.  Making a decision about what to eat was tricky.

After dinner Dad and Liz headed home and Chris and I went back up to Bennett's room to grab our stuff and say good night.  Luckily it wasn't super late at this point- probably around 9:30 or so.  When we got back to my room at the Brigham I called my nurse for meds.  I was in pain- both in my abdomen and also my breasts.  I started crying again.  She was wonderful- offering multiple suggestions of things to try (ice, certain positions, etc).  And she also asked some of the other nurses for other suggestions.

And Chris has been great.  I think we both realized I need more support.  I've been trying to let him sleep through my nighttime pumping, but it makes it worse for me.  So last night he was wonderful getting up to help me with setup, washing pump parts, etc.  And I'm still engorged and in pain, but at least the night wasn't as bad as it could have been.

This morning the OB doctor came in, removed my staples, and basically cleared me to go home.  I cried again over my frustrations, but she was very understanding.  It's odd how such a seemingly normal and routine thing can frustrate me so much.  She also is going to do what she can to have a lactation consultant see me before we leave this morning.  If that doesn't happen, I'll make sure that I see one at Children's tomorrow.

So to sum everything up, I'm frustrated- partly because I don't know what's going on with Bennett.  My brain is mush.  I'm constantly tired.  I'm busy with visitors (this doesn't mean you should stop visiting.)  I'm buty with pumping.  I just can't keep it all together anymore.
And now- for a final word to everyone who we know only mean well....
Please don't tell me that I need to be taking care of myself.  That I need to remember to eat and sleep.  I know this.  We both know this.  We are eating.  I'm drinking plenty of fluids.  I'm sleeping as much as I can.  If Bennett were in the room with us, I'd be waking up as much as this so that I can feed him and I wouldn't get so much of what comes across as criticism.  I want to ultimately be able to breastfeed Bennett.  To be able to do that, I need to keep up with pumping as frequently as I would feed him.  This means pumping every 2-3 hours.  Since there's set-up and clean-up time that goes along with pumping, I feel as if I'm always pumping.  Or at least I should be.  I find that I may not be pumping as frequently as I should since I feel like I'm always pumping, but I also know I need to be better at it and keep to a schedule.

Bennett's Name

It's official.  Bennett can legally be a Bredford!

Although we've known for years that we wanted to use the last name Bredford for any children we have we weren't sure if we legally could.  And it seems to be a question that stumps people when we've mentioned it here.  In fact, when Chris went to fill out the registration paperwork for Bennett and he explained what we were going to do, he was asked, "Does the mother know?  And is she ok with it?"

Yesterday afternoon someone found me in my room at the Brigham.  This in and of itself is a challenge- it seems as if I'm rarely here.  Anyway, I had to give her first and middle names and had to change what she had for last name.  Interestingly, they had his last name on the paperwork as Tedford, while everywhere else he has been listed as Baby Boy Breecher.

So I cross out Tedford and write in Bredford.  She asks if it had been spelled wrong.  I say no, we're giving him a new last name- and I explain that Bredford is a combo of Breecher and Tedford. "Can you do that?" she asks.  And this is where I started to get defensive.  Maybe because I don't know if I legally can.  But as Chris and I have told numerous people now, how is it any different than making up a new last name by hyphenating.  Breecher-Tedford is still a new name.  It's just more common.  I explained this to her and she said she'd call City Hall to verify.  A few minutes later, she calls me.  No problem!  Woo hoo.

She comes back a little while later with the actual certificate for me to sign.  I review (and second guess the spelling of my birthplace- does Anniston have one N or two?) and sign.  Now we just need to wait a few weeks and we can get our copy.  She gave me a letter in instructions on how to do that, and it also included social security info.  It says I requested that as well, but I don't remember doing so.  It must have been a box that was checked or initialed or something that I assumed was something else.  I had been a little distracted during all of this as I was making phone calls during parts and had a visitor (thanks for coming by, Mel) when I had to review and sign the final copy.

He's Here!

I'm sure most readers of this blog have heard already, but Bennett Henry Bredford made his entry into the world on Wednesday at 10:20pm.  He weighed in at 4 lbs, 4 ounces and is 17" long.

There's plenty that can be told about why he came early and how he's doing, but I'm too tired to think!  The short answer is that due to late decels noticed during NSTs that led to a few hours of continuous monitoring and ultimately the decision for him to be delivered (c-section). 

Thursday afternoon he had his first surgery which went very well.  However the anesthesiologist commented that little Bennett has the most wires attached to him of any baby here at the hospital!  Not sure that's a claim to fame that we want.  But they keep telling us that he's looking good- so we're going with that.

All grandparents have now had a chance to meet him.  Grampa and Nana (Jerry and Liz) came by Thursday night.  Mimi (Carolyn) came this morning and Grandma and Grandpa Tedford drove up and arrived this afternoon.  Uncle Andrew and Aunt Gentry will be by at some point tomorrow.

I'll try to get some more thorough updates posted as they do help me wrap my brain around everything.  Plus they're a nice record of everything we've gone though.  However, my brain is mush.  I don't think I was ever able to fall asleep on Wednesday night.  I did sleep a bit last night but had to get up a few times to pump- really no different than if we were at home and I had to get up to feed him.

A Mini Update

Today I went back for another NST and a BPP.  Passed the BPP with flying colors.  Amazing what can happen when you get a chance to eat lunch, and you drink a Coke on the ride over.  :)

Unfortunately, Baby didn't pass the NST.  However, the nurse commented afterward that some babies never pass a NST, so she didn't seem overly concerned.

Back again on Wednesday for another day at the two hospitals.  And in theory, we scheduled appointments far enough apart that we'll have time to get lunch.

33 Weeks

Your baby is proportioned like a pineapple when it comes to weight -- a little over 4 pounds. (Length: more than 17 inches, head to heel.)

33 Weeks- Development

Your Baby This Coming Week

Your baby weighs almost 5 lbs (2250 g) and is 12.8 inches (32cm) from crown to rump and about 19.8 inches (44cm) long.
If your baby were born now, she would be considered "pre-term" rather than premature. This distinction is based on fetal maturity, particularly the maturity of the fetal lungs. A pre-term baby, unlike a premature baby, is likely to have well-developed lungs and is less likely to need intensive care.
Your baby is surrounded by a red glow when sunlight shines on your belly and may be aware of this as she is able to differentiate between light and dark.
Your baby's hair is getting thicker, though it may be a different color when she is older.
She is currently shedding her lanugo, the fine downy hair that previously covered her body.
More vernix, the waxy coating that protects your baby's skin while submerged in amniotic fluid, is building up.
Your baby's adrenal glands are producing more steroid hormone, the androgen-like hormone that indirectly aids your milk production. Your baby is currently producing ten times more of this hormone than a normal adult and the adrenal glands are currently the same size as those of an adolescent. They will shrink after birth.
Your baby is laying down bone. To do this, she will draw calcium from you.
Your baby has taste buds and it has been suggested that she can taste and develop tastes for flavors found in the amniotic fluid, particularly flavors that you eat on a regular basis.

Your Body This Coming Week

Your baby is beginning to drop in your pelvis and you may have noticed that the shape of your abdomen has changed because of this. This may also cause increased pressure in your pelvic region.
While Braxton Hicks contractions are probably becoming more regular, you may also experience false labor. This is different from Braxton Hicks contractions because false labor, unlike Braxton Hicks, can be very painful. These contractions are irregular and usually last under 45 seconds and are not sustained. If you are unsure if you are experiencing false labor, you should contact your care provider.
If your water breaks, you should contact your doctor immediately.
You may have bloody show that occurs as the cervix stretches and dilates, especially right after a vaginal exam. You may also pass a mucus plug. Neither bloody show or passing the mucus plug necessarily indicates that labor will commence right away, but it will not be far away.