Recovery Day #4

We walked in today as Alida was getting her chest tubes removed. Her drainage was down to 20ml so they felt comfortable removing them. They plan to remove her subclavian central line and put a PICC line in one of her lower extremities tomorrow. When they do the line change they will also pull her external pacing leads (blue wires on her belly in the photos below). They ended the fentanyl last night. If everything goes well after switching to the PICC line tomorrow, they may extubate her in the afternoon. Her vent settings are down to a rate of 10 and oxygen percentage of 35% (room air is 21%). She is still having a few irregular heart rhythms that they are going to watch and determine if her pacemaker needs anymore adjustments. It’s nice seeing her with a few less tubes and her chest incision looks great.

We got to see her chest X-ray this morning. It was our first time seeing the pacemaker size in relation to her body as well as it’s positioning. This is NOT Alida, but it gives you a general idea of what the chest X-Ray looked like. We could also see the wires holding her sternum together, which this patient doesn’t have.

It’s snowing today which makes it feel a little more like Christmas time. We are able to enjoy it since we are only getting a few inches down here, instead of several feet. This is the view from Alida’s hospital room.

We are enjoying our stay at the Ronald house. It is under construction. They are doubling the size of it plus renovating existing portions. They just finished the communal kitchen on the floor above us. It is beautiful.

The room is small with two single beds and the hardest memory foam we have ever slept on. Brian jumped onto bed on his side last night with quite the thud. We were joking that if you jumped too high and hard into bed, you might break your clavicle or throw out your shoulder or back. We will keep this in mind over the next few weeks during our bed jumping escapades. Brian did settle in with Lucie last night after the memory foam relaxed a little.

Brian is growing some facial hair for the first time in his life. I told him her needs to wait until at least Wednesday to shave.

We continue to take it one day at a time, celebrate the small victories, and enjoy each other’s company. Happy Sunday!

Post Op Day 2 from Surgery #3

Alida continues to make gradual improvements. Just like when she was in the NICU, we have to be patient and listen to her. She will tell us when she is ready to have things removed or discontinued.

She had a good night last night. But then this morning she was fairly awake and got agitated and worked up. As her meds get reduced she has more awake times. When she is more awake she either gets uncomfortable or upset about all of her tubes and lines. Then she clamps down, restricts her blood flow and causes her sats (blood oxygen saturation levels), particularly to her renals, to drop. That results in giving her more medications to calm her down so her sats come back up. It becomes this viscous cycle that makes it difficult to wean her from the vent and her medications. This morning they gave her Ativan, morphine, and versed before she calmed down.

They are going to try to adjust her medications in an effort to get her extubated and progress her recovery. However, at some point they will have to take a leap of faith that she is ready and extubate her. She will reach a point that being intubated is making her more agitated and is canceling out the support it’s giving her. It’s difficult to know when that time is. She has been on fentanyl (a very potent, short acting narcotic) over a week so they are trying to wean her off that and switch to methadone (another narcotic that isn’t quite as potent and longer acting). Eventually they will wean her from that too.

They are planning on taking her foley (catheter) out today and hope to get her chest tubes removed in the next couple of days. They are considering taking the central line out of her left subclavian vein. They would switch her to a PICC line for medications. Her feedings are increasing to 15ml every three hours.

Her pacemaker is doing well. They said the leads are very well placed and getting strong signals. They have had to make a few adjustments to her pacemaker, which is normal. She was having atrial tachycardia; a type of SVT which is essentially a very rapid heart rate. As her heart would go into these rapid rhythms, it would cause pacemaker mediated tachycardia (PMT), which is when the pacemaker paces the ventricles at an inappropriately fast rate. Basically her atrial electrical pulse (the SA node) was sending an abnormally fast signal and the pacemaker picked up the rhythm and paced her ventricle equally fast. Her pacemaker has been adjusted so that if her heart goes into atrial tachycardia, the pacemaker will help regulate it rather than going into PMT. This all sounds complicated and a bit scary, but they gave us the impression that it’s nothing to worry about and is more a matter of fine tuning her pacemaker to work best for her.

Initially we were told she would be discharged 10-14 days post surgery. We asked if that is still the general estimate from Wednesday’s surgery. They indicated it will be more around 3-4 weeks from now. We will probably be spending Christmas in Milwaukee. The good part is that the girls aren’t old enough to understand this and be bummed if we missed any Christmas traditions. Instead it will be a special Christmas that Brian and I never forget. It will truly be a year where we celebrate the meaning of Christmas and all that we have – family, love, and faith.

Headed into the OR #3

After a long day of waiting for another patient’s surgery to be completed, Alida is finally off to the OR for her third procedure. They will put in the pacemaker and close her chest. It never seems to get easier watching them wheel away your baby into the operating room. Alida will be strong and do great and then we can be on the road to recovery. We spoke with another family today who has a child in the cardiac ICU. Their three month old, after six surgeries already, is waiting for a heart transplant. I can’t imagine waiting for a heart transplant for your baby. Our thoughts and prayers are with that family and the countless others that are here in the hospital with their children. May the Christmas season bring them all miracles.

We will update you once Alida is out of surgery.

Pacemaker Day

Later this afternoon Alida will receive her pacemaker and get her chest closed. She had a good night and her swelling has gone down. She has also flushed enough fluids in order for the doctors to think she will handle the chest closure adequately. She will heading back into the Operating Room for hopefully the last time. Since we are seven days post-op and Alida’s heart has not regained its electrical communication capabilities, the pacemaker will be necessary to keep her heart functioning properly. We will give an update post-op.

Eyes Open

The paralysis has slowly worn off. We got to see Alida open her eyes for the first time since last Wednesday when she left for surgery. It was wonderful. Even though she is puffy and her eyes are a little glazed over, it was still very emotional. She has such intent, sweet eyes. Seeing them today gave me hope. Our baby girl is strong and she is going to make it through all of this.

Not much else changed today. Just monitoring her to make sure all of her levels are where they should be and that she is comfortable. She is scheduled to have the pacemaker put in tomorrow and her chest closed. The pacemaker goes in her abdomen until she is older and big enough to have it in her upper chest. She can do most everything with the pacemaker. We’ve just been warned that entering an MRI machine, working near large transformers, and operating chainsaws might not be advisable. Also, she’ll get a card to let TSA know she will alarm the detectors in airport security.

We are fearful yet again of sending our little girl back into the OR tomorrow for the third time in the last week. We know she’ll do great again and tomorrow marks the first step toward recovery. Little Alida is the toughest little seven pounder we know. She continues to amaze us and touch us each day.

With the help of our nurse Rachel today, we got to experience a special moment. Instead of describing it, we will just give you the picture.

Post Op Day 1

Alida continues to plug along today. She is dependent upon a ventilator and pace maker but her stats are good and she is still peeing, which is a good sign. Because of the size and complexity of her VSD, there is an increased risk that they could have damaged her heart’s electrical system. The electrical system is not like a vein you can see, therefore there is no way of knowing if they damaged it. Currently her heart is not communicating properly to pump on its own so she is dependent upon the pacemaker. It is possible the inflammation from the surgery is causing the problem and her heart can regain its ability to start beating on its own. If it doesn’t start beating on its own in about a week, then she will need to have a pacemaker for the rest of her life. It would be put in her abdomen until she is older and then it would be moved to her chest. We are holding out hope that she will regain the electrical signal and won’t need the pacemaker. She loves to prove people wrong.

Due to the complexities of the surgery yesterday we are anticipated to be in the hospital for more around a month rather than 10-14 days.

Lucie is doing wonderful. She is kicking and smiling more and more every day. She is starting to smile in response to voices and faces. We can’t wait for Alida to join Lucie and play together.