God thought we were getting bored.
Monday: Miss E did not eat well all day. She sweat profusely (you would have thought you dumped water down the back of her head) whenever you attempted in vain to convince her that she really should eat because it had been hours and hours. She wanted nothing to do with the bottle. No screaming or arching away, reflux-style; she just hung out with it in her mouth and won't drink, or stuck her tongue out at you, or talked to you in babyspeak about why she wasn't going to drink, very sweetly. The medicine syringe feeding, our usual fallback, wasn't going much better. I came home and called her pediatrician, who wanted to see her in the office. They told me to pass the news of these symptoms on to her cardiologist, and they gave him a buzz as well. Now, our pediatric cardiology doc, who we love, is an attending at duPont Children's Hospital in Wilmington, and he sees kids in NJ on Thursdays only. He listens well, he seems to think we know what we're talking about when it comes to our own kid, and we like his soft-spoken bedside manner. So I readily called him down there and instead I got the on-call cardio doc, who I was less than thrilled to talk to: Mr. I'm-busy-over-here-what-do-you-want. "I don't really understand why she's having all these congestive heart failure symptoms when her PDA is so small." REALLY? Hold on, let me just go explain that to her.
He told me to give her an extra dose of a diuretic at midnight to see if it helps (reduces the swelling of her heart, alleviating her symptoms). I took her in to her pediatrician for a check and her vitals were good (pulse rate, respiration rate was significantly high but when is it not high?, and her color was good), but he didn't really like what he saw, either. We were both having a Miss Clavel from Madeline moment: "Something is not right!" Pediatrician says he was calling Mr. GOOD Cardiologist himself. We got home and Mr. G. C. called me shortly after. He was ticked that he wasn't paged to talk to me earlier, instead of Dr. Busypants. He gently broke it to me that we woul have to proceed soon with surgery, rather than waiting for her to be evaluated as a candidate for the catheter procedure. The risk of infection of the heart/lungs (which in this situation has an up to 50% mortality rate) isn't worth the benefit of possibly doing the catheter procedure and avoiding surgery. I gave him a Heck Yeah, and he told me he would see what he can do about getting her in next week.
Tuesday: More of the same, ate slightly better, if I remember correctly. Less sweating. Medicine syringe feeding was all that was really working. Life was again about getting enough fluid into her to keep her hydrated and out of the ER (you can take them in for fluids if this happens).
Wednesday: Towards the end of my lunch I got a call from the medical secretary at duPont. She talked to our cardiologist and they wanted to proceed with surgery. She wanted us to come in the next day at 10 AM for pre-op tests and E would be first on the schedule Friday morning. We were told we should stay down in Wilmington at the Ronald McDonald House Thursday night after the tests and be at the hospital bright and early, 6:15 AM, for admitting and pre-op stuff. 10 minutes of talking to her, scribbling notes and phone numbers on the white board in the art room where I was eating lunch, and I then taught three back-to-back classes. Don't ask me what I taught. And then I flew home.
I made some phone calls and packed like crazy.
Meanwhile, Bob heard from two sources about two separate job openings for next year. The market is flooded with teachers with RIF notices in their hands, so competition is probably high for these positions. He spent the evening updating his resume and writing cover letters to send out the next day. We went to bed late but (mostly) ready to roll the next morning. Turns out I forgot a bunch of stuff, like my glasses, etc., but we did pretty well, considering.
Thursday: We dropped Maddie at Nana and Pop's, and Nana took Bob's job application stuff to mail for him. We drove down to Wilmington and located the Outpatient Testing area at duPont. E had blood drawn for labs (she was less than thrilled), an EKG and Echo cardiogram ( she slept through!), and we got a tour of the Cardiac Unit and CICU (Cardiac Intensive Care Unit) at duPont. All this took about 5 hours. We left, and checked into the Ronald McDonald House right down the road. What a place. I will be pitching my change into every RMH charity box I find. This place is amazing. As it should be. Some families are there for one night, like us. Some are there for months, even over a year, while their child has medical therapy treatments or awaits a tranplant. It's a big like a co-op mixed with a fancy hotel. Check it out:
The game room off the living room:
The playroom on the main floor (one of many in the building):
The living room/play room on our floor:
We all collapsed there. Barclay's bank employees were the volunteers for dinner that night. They grilled steak. Good night to be there.
Friday: We got up at 4:30 and brought her in to the cardiac unit. They checked us right into a room gigantic room and started prepping her for surgery. She was happy and kicky. We were barely nervous at all until the pediatric cardiothoracic surgeon came in to talk to us. Here's what he said:
- This is a simple surgical procedure. They go in on the left side of her back under her arm and tie the PDA closed. She'll have a scar there.
- This is a more painful incision to heal from than an incision on the chest, but they have to go in from the back because of the location of the PDA.
- There is a very small chance that there could be a buildup of air in the chest cavity which could affect her breathing.
- There is a larger chance that she could have vocal hoarseness or vocal chord damage because of the breathing tube, or because they have to move a nerve that is connected to the left vocal chord. But the chance of this damage being permanent is less than one percent.
So yeah, like I said, we were feeling pretty good about everything, especially since Thursday's tour and explanations. Then he came in and made us worry all over again. We held her a while. Then were told it was time so we put her in a hospital baby shirt and diaper and walked her down the hall to the OR. It's all there on the same cardiac unit. I hugged and kissed her, and handed her to Bob. I couldn't do the handing over to the anesthesiologist. I did make it back to our room without crying, though. Our nurse told us to go get some breakfast and they'd call us when she was done. We went down to the cafeteria but brought our food upstairs to our room to wait. As we were coming in the unit our nurse found us and told us the surgery was done. That was it! I was like, "Are you sure? They can take their time, you know!" She said to eat and they'd call us to come see her soon.
20 minutes later we went in to the Cardiac Intensive Care Unit to see her. The whole thing took about an hour. We had been prepped to see a scary mess. They warned us about the breathing tube, some skin palor, some blood. I thought she looked beautiful. She was a healthy pink color and she was breathing so easily. I know she was under anesthesia still, but that was the first time I had seen her respiration rate on a monitor be a normal number (20 - 60 bpm. She was often 70-80 or higher). Seeing her breathe so easily just gave me a good feeling. The surgeon came in to talk to us and told us that everything went great and that her PDA was "quite large". (REALLY? Because Mr. Busypants didn't think so. A nurse later said that he must have had the wrong chart because at that point they didn't even have measurements. Doh.)
We were told to let her alone and let her rest. She reacted to my voice and started to wake, so we just kept quiet and stayed out of there to let her sleep the day away. We went to see her 2 more times that day, just to peek, and she was fine.
E, the second time we saw her after surgery. Breathing tube removed, sleeping peacefully:
Saturday: She was still in the CICU but looking good. We ate in the cafeteria and hung out in our room, trying to keep busy. They brought her to our room around 3PM that day. :-) Actually it's HER room, we just roomed in with her. She was on morphine, motrin, and tylenol for the pain. They weaned her off the morphine and she seemed ok. She wasn't interested in eating (but what else is new?) so they kept her on IV a few more hours. Nana and Pop brought Maddie to visit and Bob and I took her down to the playground and the cafeteria for dinner. Then everybody went home but me and Ellie.
Saturday night was NOT a good night for her. The morphine had apparently been keeping her happy and she was not loving life without it. The incision was painful and she was not able to sleep through the pain anymore. She was still not into eating, and holding her was very difficult. Between the variously timed medications, feeding her, and her being in pain and very upset, sleep was not to be had by either of us in any kind of measurable way. We both dozed a few times for no longer than a half hour. Poor baby was miserable. And I didn't feel so hot either.
Rockabye, poor sad baby:
Sunday: When she was not in pain and therefore screaming in this horrible shrieky/raspy quasi-wail (her throat was a mess from the breathing tube) she was happy, kicky as all get out, and active. Maddie-style active. Who knew we had an active kid? They had a hard time keeping her LEADS on for her monitor, and they couldn't get a blood pressure cuff to work. Her daytime nurse and I made sure we timed her meds carefully and got back on top of her pain management. They considered giving her morphine again but around then we discovered that she had kicked her IV boot off her foot, pulling out the IV catheter and all. Good times. She was also not taking a bottle much at all. 10 ml here, 15 ml there. Not enough. A healthy 3 month-old takes 100 + ml a feeding. So they took her to the treatment room and dropped a feeding tube in her. At first I felt this to be a giant step backwards. I mean, wasn't this surgery supposed to be what fixed her, eating and all? Well, not yet. It began to be come apparent that, while the reflux is, well, reflux, and the PDA was making her pant and tire, she also just plain doesn't know how to eat. (I know! A child of mine! Imagine!) So the feeding tube took over the job of the medicine syringe. The latter is a bad habit in the eyes of those who are professional baby feeders at the hospital. This just makes sure that she gets the food she needs to stay strong and gain weight, while having her work on the bottle technique. The problem was that we couldn't do any of our old tricks that helped her settle down and concentrate on eating. Same with getting her to take a freakin'n nap! Put this kid in a swing, or swaddle her up and rock her, and she's out like a light. Although we don't how much of her good sleeping rep was related to being exhausted from the congestive heart failure, I do know I used to have a kid who slept!
Hanging out in the hospital was very frustrating and isolating at times. I wasn't sure what would work or what would hurt her back or throat, so there was only so much I could do to soothe her. You couldn't really walk away from her crib for more than a second without her getting very upset. I totally understood; her whole world had been messed with and this was not her room and not her crib and she probably would love to know why she hurt so bad. The nurses always said, "Don't hesitate to call me for help." but if I did that they'd have disconnected my buzzer after one day. I was unsure and when she got really freaked out, crying and flailing and hurting herself more so crying and flailing more - I didn't know what to do sometimes. I timed my bathroom breaks to when the nurses came in to give her more meds. I did eventually tell them I was going to the cafeteria (just to get out of the room, by the 2nd day the nice big room was feeling smaller and smaller) and they monitored the room from the nurse's station. When I came back 10 minutes later there was no baby in my room - she was being rocked at their station after waking up and finding no Mommy. Poor kid was a mess.
Sunday night her nurse, Marybeth, was a transfer from the CICU, and she was happy to be off that higher-stress floor. She was my angel. She had some feeding expertise and gave Miss E her bottle. Now, she didn't take more than 25 ml but she kept at it for 20 minutes, a new record for her short attention span. Marybeth also just sat and talked with me for over an hour. She said she wanted to make sure Ellie got some decent sleep and that I could sleep as well, so she decided to put all E's feeds "down the tube", as well as her mediations. We got to bed at 11:00 and both didn't get up till 6:30. I woke when the nurse came in several times over the night, but I was so out of it I barely remember more than her telling me that she gave her one med or another, and to go back to sleep. The whole idea was that we both got to "reboot" after a long hard couple of days and nights. It worked pretty well.
Monday: She was doing better. Still not eating "well" but she was picking it up a little more each time. Her nurses told me that they wanted to call a speech therapist to work on her feeding issues - apparently this is the other realm of speech therapy - babies who don't suck well. (That's right. Some babies are NOT born naturally knowing how to eat. And La Leche can suck on that.) They also wanted to call an ear, nose, and throat doctor to examine the damage to her throat; her voice was still raspy and pathetic. You pretty much had to look right at her face to see if she was crying or talking or all-out losing her mind. It all sounded the same, but she rotated through these stages other pretty quickly.
She was getting more into the bottle - wants to hold it herself SO much:
Bob and Maddie came up to visit and Bob and I traded kids and jobs. I had to be at school Tuesday not matter what - I have 1/2 a personal day left to my name. That's all. Bob had about 2 weeks worth of sick days and no job to roll them over into next year - so what was he saving them for? I briefed Bob on the routine and E's progress, and we said goodbye. I took Maddie home and we've been home in Pine Hill ever since, while Bob and Ellie are still at duPont.
Since then: (You know how I like bullets to organize myself)
- She's still on the feeding tube and may go home with it. We'll be trained on it if she does.
- She's getting about 27 oz. a day (7 more than her absolute best intake at home!) and half or more of that is by bottle. So we think she's learning.
- She had another echo cardiogram and they discovered that there is some slacking-off on the part of her left ventricle, due to the largeness of her former PDA and the mess it made of her heart. She's now on blood pressure medication and bp monitoring, and that will heal up with time and meds.
- She's been seen by an Otolaryngologist (ENT) who said she clearly has Laryngomalacia (Example of what it does to a baby HERE, although I've heard these sounds from her she's never been quite that bad. I have, on several occasions, been totally convinced that she's choking...and now I know why.) This does not help with the feeding thing, to be sure! There is no "cure" for this. They grow out of it. So again, time heals. But it's a giant relief to know what it is and that it's not that big a deal.
- She's been seen by a Speech/Feeding therapist, who ordered an Upper GI to view her swallowing technique and anatomy. We don't know yet if there's something wrong with her throat or mouth, or if she just don't get it when it comes to drinking. She said Ellie is a "very difficult baby to feed" (Can I get an Amen!?!?) and that she's never had a chance to really learn how to eat well between the reflux and the PDA and the trouble swallowing that the Laryngomalacia causes. She said there's not a lot they can do to help outside of practicing with good technique. Just having the PDA repaired and hopefully keeping the reflux in check will give her a leg up. They can help us mess with the thickness of the formula (rice or Thick It) or the flow of the nipple, to find her optimum "setting". So we have some waiting to do, some more patience to find. I'll update about the Upper GI, which is due at 1:00 PM today.
- Physical Therapy came by today and told Bob to have her play mat and Bumbo seat brought in so she can commence playing and baby skill-building. They think her incision is healing nicely and she's ready to start getting back some of the muscle tone that she lost from being sickly and then hanging out in a hospital crib for days. So that's good news. Hooray for play!
However, we have no idea when she'll be home. None.
I've learned from Ellie's 3 hospitalizations (in 4 months!) that doctors never want to tell you that you'll be discharged soon unless they're pretty much ready to discharge you right then and there. They don't want to get your hopes up, it's just too mean. To get out of the hospital, she has to:
- Continue eating well and taking more and more of the recommended 100 ml per feeding in a bottle, not the tube. Yes, please!
- Tolerate the feedings well from the bottle & tube, not throw them up. Sounds awesome.
- Gain weight! Never thought I'd hear a child of mine repeatedly described as "too skinny".
- Get a Learn-to-Eat plan from the speech therapist and set up more help as outpatient therapy with a specialist near us - exactly what is done will depend on what they see on the upper GI. I am excited about this. I love getting answers.
- Have her heart and blood pressure keep looking good. Needless to say, I like this idea too.
It seems funny that she got in there for a heart issue and now most of the attention paid to her is regarding feeding, but that's really her biggest problem now. The PDA was a drain on her system, and a huge burden to her heart, not to mention very dangerous if left to cause an infection. So now that that's closed and she's on the mend, her other sweet little issues can be addressed. One of the doctors I met with this week said, "We treat the whole child." Good, because I don't think I can take leaving the hospital with a child who's not well, again.
On the way to this point we found out WHY she seems to have these issues, and we're thanking God that they're all freakin' annoying... but not really dangerous.
I'll post more updates as I get them (and as I get time). It's always one more thing with this kid, so who knows what I'll have to report next! People at school have been very sweet and we've had a lot of help, love, and support from family and friends. We love you guys. Really we're ok, thank you. While this has been one hell of a long, interesting ride... she'll be fine, we'll be fine, and we're just thanking God for that.