Chiaffredo Family Blogs

Today consisted of a follow up visit to the Pediatrician. Leila has apparently taken to eating quite well. In the 5 days since her first visit the the Ped she has put on 5 ounces of weight and now weighs 7lbs 10oz. It’s normal for babies to drop up to about 10% of their birth weight as they acclimate to life on the outside. In Leila’s case, she really took a hit on her weight after surgery as the recovery and the Lasix (water pill) she was on.

Tomorrow she goes back to Children’s Hospital for a follow up with her surgeon, Dr. Kogon. Based on everything we are seeing she’s doing great. She will have a X-ray done to check her out on the inside, but nothing is indicating that she’s having any difficulties.

Next week she will be seen by her new Pediatric Cardiologist. He will be her heart doctor and give her yearly check ups for the rest of her days. These will just be checkups so there are no surprises.

All for now!

3:30pm – Yes, it’s true! We brought Leila home today! We’re still settling in or I would write more. Trust me, there is plenty to share.

Thank you to all of you who called, emailed, commented, and Facebook’d us. We definitely felt the love during what was a very difficult time for our family. We are ecstatic to be home with our little girl. Tonight where ever you are, feel free to raise a glass and celebrate with us!

Love,

Mary, Tony, Joe, and Leila

5:00pm – The subject says it all, and we’re not done yet. Leila’s say started with morning labs (blood work), a chest x-ray, an ultrasound of her heart and arteries, a hearing test will be redone tomorrow (it wasn’t quiet enough with everything else going on in her room today). It was at this point that we figured out that her discard checklist is what was driving all of this attention. Mommy and Daddy both got a walk-through on her feeding tube. She also had a MRI brain scan (taken for a research study here at Elgeston). She continues to be presented with a bottle of Mary’s breast milk every three hours as we try to teach her to suck-swallow-breath. It’s harder than one might think. And last but not least, her car seat test.

Two pieces of good news, actually every day is filled with great news. Leila’s surgeon has given Mary the go ahead to attempt breast feeding. We are cautiously optimistic because Leila is not having great results with the bottle. We have to believe that soon it will just work, and we’ll be able to take her off of her feeding tube. The second and probably biggest of the week, is that Leila’s surgeon says she can go home as soon as we are ready to take on her full time care. I think with that motivation, Mary and I (with Aunt Peggy’s help) will put the final touches on administering her medications, working with her feeding tube, and cleaning of Leila’s suture. We are excited to see the light at the end of this tunnel.

Stay tuned for the final pages of Chapter 1. I’m calling it Leila’s Challenges.

2pm – Sorry for the late update, it has been a busy day. I think Leila has had the easier tasks today. Her day has consisted of eating. Mary’s and my day on the other hand has been about going back to school. A 10am class to learn about taking baby home followed by a ‘how to administer medication’ session. We got a short 5 minutes with Leila before they kicked us out to put in a fresh IV line.

A quick lunch and then we were back to work with her speech coach. No, she’s not quite ready to say the word elephant, but apparently the speech therapists help with feeding baby too. After Leila grew tired of eating, we switched over to using her feeding tube. That’s a pretty relaxing process as she quickly fell asleep in Daddy’s arms only to awake when she was put back into her crib because Mommy and Daddy had to head off to their CPR class.

Class wasn’t very interesting because we had gone through Infant CPR before Joey was born. So it was just a refresher. Daddy is convinced that lactation coaches are the devil, and CPR trainers are the devil’s spawn. Both are placed on this earth to pester and piss off moms and dads.

Right now Leila is getting a MRI taken of her little brain, all is good so not to worry. We were approached to participate in a study to help identify and refine treatment methods for babies who undergo heart bypass surgery. A brain scan and development reviews at 1 and 2 years of age are part of the study. This is nothing more than experts evaluating Leila’s health and development. We feel it would be best for Leila to have these expert doctors reviewing her in case she needs special attention to develop into a perfectly normal child.

I started the post with the subject Headed to the Floor. Yup, that’s right…Leila is being moved to Step Down today. Our little girl is one step closer to going home. She’ll be in her own room where we can have more visitors and more quiet time, both are welcome. Leila is continuing to remain very stable in all of her numbers. We just need her to start feeding by bottle. Mary continues to pump, and her milk is Leila’s primary source of nourishment now.

That’s all for now. We’ll be sure to make an update at least once a day until she goes home. -Tony

4pm – A lot has happened since this morning. Leila is still in CICU and we continue to try to feed her. As Tony mentioned earlier, this is the last major step before moving her into a regular room. She’s taking the breast milk, but very slowly. They just put in a feeding tube (and I watched – what was I thinking??) and we’ll continue to try to give her the bottle. I just received an update from her nurse (Noelle) that she will be moved to the Step Down Unit tomorrow if feeding with a bottle is the only thing left to work on.

She was completely off of oxygen for a few hours and doing well. The RT removed it a little earlier today since she was breathing so well on her own. Her oxygen levels were at 97, but dropped down to about 90-91. The nurse wanted to see stronger numbers, so they just put her back on a minimal amount of oxygen. They also removed the IV in her hand, which they’ll have to replace since she knocked out the one in her foot kicking so much last night. -Mary

9am – More stuff coming off! This morning Leila is a little ticked because they took the pacemaker leads off of her heart. The leads were attached directly to the sides of her heart in case it needed help with its rhythm. The leads are loosely attached, and they are very tiny wires so with a gentle and steady pull, they come right out. Since her surgery, her heart has not needed any help with its rhythm, so their removal is another step in the right direction.

Leila is also starting to get Mary’s breast milk. This is Leila’s last big step. If she begins to take a bottle, then she can be moved to the Intensive Care Step Down Unit. She will still be watched closely, but she will be moved into her own room and we will become her primary caregivers including giving her any medications and feeding her. Leila’s progress is excellent, so we are being told she could be transferred today or tomorrow. We’ve been told that Leila would likely stay in Step Down for about 3 days. It won’t be long before she is at home with her big brother.

5:45pm – Leila just took her first bottle. She didn’t quite slam it, only taking 5ccs (1/3 of an ounce), but we’ll take it for a first try.

12:30pm – Leila’s breathing tube is out! Two of her drainage tubes are out. One of her IVs was removed. Today is a day of being unplugged. She woke right up when Mary and I started talking to her. Here little eyes focused right in on us. He nurse Alison said that she is even suckling on her pacifier! What a great day! I’ll post picture soon.

0:30am – Every night before we go to bed, we call to get a stutus on Leila. Tonight’s status was so nice to hear that I had to post. Angela, Leila’s nurse to me that the had started to ween Leila from the respirator. They have turned her down to 10 breaths a minute, and Leila is breathing over it at 20 breaths a minute. They have checked her blood gases which verified she’s doing great. They will be doing CPAPS on her tonight which is trials of turning off the respirator to check that she will talk over all breathing. These trials will help her strenghten her lungs and prepare her for extibation of her breathing tube! Based on what I’m hearing it sounds like a real possibility that Leila’s breathing tube will be out tomorrow morning. Amazing! Simply amazing!

4:30pm – Our little girl is all buttoned up! Around here they call it getting her zipper. Her chest has been closed and stitched up. I can say that her heart surgery is now finished. It’s rather obvious at this point that she’s “snowed”. She’s resting very well. Our nurse said that she was wiggling her toes not long ago, which must mean she’s ready to go. Time to go home mommy and daddy. We’ll continue to be at her bedside and hopefully be able to see her open her eyes before we kicked out for rounds. From here on out it’s up to her how long and well her recovery goes.

3pm – The surgical team just arrived. They are setting up to close Leila’s chest. It will be about an hour before we can get back in to see her. The procedure is performed in the CICU at her bed. They will use titanium wire to rejoin her ribcage and secure it so it heals correctly. The wire will stay in our little angel for the rest of her life. Her sternum will heal just like any broken bone and will be stronger now than it was before her surgery.

We have been told that she will take a little step back while her body readjusts to being squeezed close, which is normal. During the close, she will receive a large quantity of pain medicine. She won’t feel the closure, but she also will be “snowed” (as one of her nurses calls it) and will ride the respirator for the next little while. I think the term snowed is appropriate as it’s snowing outside today, not something that happens every day in Atlanta. Based on estimates, the next step is to slowly ween her from her breathing tube. This process will take 24 to 72 hours. It’s all based on how quickly Leila wants to move ahead. She’s been strong and has rested well for the past 48 hours. She should handle this next step just like the ones before it – like a champ.

11:30am – Dr. Kogon walked through Leila’s floor and stopped to check on her. Just as she has for the past 36 hours, she is doing great. She remains very stable and is resting well. They started her on lipids (fats) last night, so she’s being fed intravenously now.

We hoped that the doctor would have time to close her incision this morning. He explained that they didn’t have the surgery staff to do the closure right then, and he was schedule to operate shortly. He did assure us that around 3 or 4pm they would have the staff available and he would close her then. So that’s all for now. Our little angel is doing great.

1:30pm – Leila is still doing great. Only change is that they are not going to ween her off the respirator since they will be closing her tomorrow and she will need it then. At times she is breathing over (taking more breaths the respirator is giving), and that’s a good thing. Leila is opening her eyes more now that the anethstesia has worn off.

9:30am – Leila had a good night. She continues to be stable in her various numbers. When we say numbers, they are things like her blood pressure using a sensor inside of her heart and in the pulmonary artery, blood oxygen levels in her hands and feet, oxygen levels after blood leaves her brain. Obviously they are monitoring her breathing on the respirator. Her blood gas and pH levels remain good. She is still receiving Lasix (a water pill) which helps her to pee and thus reduce fluid and swelling from her body.

Today plans are to continue to monitor her, and begin to ween her off of the ventilator. It’s still the plan that tomorrow when they will wire her breastbone together and suture her chest closed.

Mary got a good night of sleep, and is pumping in anticipation of Leila taking milk from a bottle, which will likely happen in a few days. Right now Leila is getting her nutrition via her IV.