Kyle’s Story

Site created on May 10, 2018

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

On April 16th, at our 20 week appointment, the doctor informed us that they discovered an abnormality on the ultrasound of Baby K's heart. We were then referred to Maternal Fetal Medicine (MFM) in Minneapolis where they would do another ultrasound and have a specialist review it.  That appointment occurred on April 18th.  After having another full ultrasound and a fetal echocardiogram, we learned that Baby K has pulmonary valve stenosis, a congenital heart defect (see link below for more information).  This condition will require him to go directly to the NICU after birth where he will most likely have to stay for a minimum of 4 - 6 weeks.  He will need to have a laparoscopic procedure to correct the pulmonary valve as soon as his team of pediatric cardiologists believe he is ready.  (Here is a description of the procedure: Cardiac catheterization by balloon valvuloplasty. In this procedure, a special tool, a catheter containing a balloon, is placed across the pulmonary valve. The balloon is inflated for a short time to stretch open the valve.)  The pediatric cardiologist we met with assured us that babies with this condition typically show no physical symptoms and generally go on to live normal lives with minimal modifications or precautions after the procedure is performed. With that said, the recovery period will be significant for Baby K once the procedure is complete.  He will be especially susceptible to infections and illness. This means that visitations and physical contact with Baby K will be very limited until he is able to make a full recovery.  We appreciate everyone's patience and understanding in this matter. 
(http://www.heart.org/HEARTORG/Conditions/CongenitalHeartDefects/AboutCongenitalHeartDefects/Pulmonary-Valve-Stenosis_UCM_307034_Article.jsp#.WxiTl0gvw2w  (http://www.heart.org/HEARTORG/Conditions/CongenitalHeartDefects/AboutCongenitalHeartDefects/Pulmonary-Valve-Stenosis_UCM_307034_Article.jsp#.WxiTl0gvw2w )) 

Lesley's prenatal care has been transferred to Maternal Fetal Medicine (MFM) "The U" in Minneapolis, where the baby's growth and health will be monitored very closely.  For the time being we will have an appointment every two weeks, with a fetal echo once a month.  Baby K will be delivered at The U of M Masonic Children's Hospital, right next door to Maternal Fetal Medicine.  He will need to stay at the NICU there until his doctors determine he is strong enough to come home.

This diagnosis has been difficult to process, but we are coming to terms with it.  Of course all we want is for our baby to be healthy and happy, and will do whatever it takes to make sure that he is.  We believe that we have the best plan of care at the best location, and trust that we are in good hands with our team of doctors.  The amount of love, support and offers of assistance that we have received from family and friends is amazing, we are so fortunate.

Newest Update

Journal entry by Lesley Kirchoff

Kyle is 7 months old now and it has been 6 weeks since his open heart surgery.  He is recovering beautifully and is doing very well.  He started rolling multiple times to get around again last week, and is working very hard on sitting independently.  Since surgery Kyle has had an aversion to being fed solids, we are thinking this may be due to the increase in oral medications we have needed to give him since surgery.  His pediatrician recommended putting purees or mashed foods on his tray and letting him play and experiment, it is so messy but fun and it seems like it may be working, he started eating the foods off his hands this week.  
Kyle has been on three medications at home since surgery: Propranolol every 8 hours to control heart rate and blood pressure, giving his heart additional recovery/healing time, Kyle has been on this medication since he was about two weeks old.  Low dose Aspirin once a day for the small clot in his right wrist.  And Furosemide(Lasix) twice a day for the first two weeks, now just once a day, this is a diuretic used to treat fluid retention caused by the heart surgery.  We are hoping to be able to stop the Aspirin and Lasix tomorrow after his cardiology follow up appointment.  He will be on the propranolol for approximately 6 more months. 
Until April 1st we had to follow specific sternal precautions such as, scooping him up rather than lifting under the arms, basically not putting any pressure or stress on his sternum.
Prior to surgery Kyle's feet were almost always cold and often purple, in the last few weeks his progress has shown as his feet are now usually more pink and warm like little baby feet should be.  Also prior to surgery, his oxygen saturation level was in the high 80s - low 90s, a definite improvement from when he was discharged from the NICU at three weeks old but still low.  Since surgery his oxygen level has been normal, in the high 90s.
The marks from IVs and toe pokes are still fading but are less noticeable every day. His scar is healing very well, Auntie Brooke was even able to do some scar tissue mobilization massage a couple of days ago. We will have to start doing this for him at home too so the scar grows well with him.
At Kyle's well check last week we realized that he hasn't gained weight in the last month, so we are going to do a weight check next week to see if he has made any progress.  Recovery from open heart surgery is tough stuff and hopefully that's all it is.  His doctor and an endocrinologist have also been monitoring his TSH (thyroid stimulating hormone) for the past several months because it has been high, we are hoping it gets to the normal range as he recovers.  We have to check it again in about a month, if it is still high at that time he will probably have to start a medication for it.

Also, Kyle has had his helmet for a month, he has done so well with it and really does not mind wearing it.  He wears it about 23 hours a day, during naps and through the night.  He has already made good progress but will most likely have to wear it through the summer. 
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