This is Sue again with a baby Matthew update.
This was a very good morning for Emily and John as they got to hold Matthew for about 15 minutes each and they got to spend some (mostly) undisturbed time with him.
Em sounded a bit better rested to day. The doctor in charge of Em’s care told her today that they will not discharge her as long as they have a bed for her so that she can stay with Matthew.
Matthew has not urinated very much since his birth and this is not a good thing. (Please pray for pee! ) Emily indicated that it signifies that his kidneys are not functioning. He is swelling more and more. The doctors advised them that Matthew is in a coma-like state. The prognosis still is not good. Keep praying!
And now, for something we’ve all been waiting for….
It is my pleasure to introduce you to Matthew Karol Snow, 9th child of John and Emily Snow:
Welcome to God’s family, Matthew Karol!!!
This entry is made by Emily and John’s friend, Sue. Emily asked me to come here and update.
Matthew Karol was born by emergency c-section at 12:24 am on 27 July 2009. He weighed in at 6lbs 7 ounces and is 19 inches long! Matthew was only 32 weeks along.
After not feeling Matthew move yesterday, Em and John went to the hospital to check on things. He showed clear signs of hydrops and his heart rate was erratic, going much too high and much too low. The doctors intervened by draining some amniotic fluid and administering heart medications through his umbilical cord. His heart rate dropped dangerously low and they decided that he needed to be born immediately.
Matthew Karol was baptized into God’s family shortly after his birth. He is on a ventilator and has been very quiet and still. He is retaining more and more fluids.
Emily is having a slow and painful recovery from her c-section.
As friend to Emily and John and as one of so, so many who love Matthew already, I ask for, beg for your continued prayers.
Emily and John have pictures that they will share when they can.
After talking to the Ped Cardiologist at U of M yesterday, she went through the “plan” for Matthew’s heart if he is able to use his lungs.. “surgical approach” to drain the valve and put in a shunt to by pass that chamber. three step surgery.. after birth, at 6 months, and again at 2-3 years. He would be living off of one side of his heart, but they have had very good success with babies with hearts “bigger” than his on this procedure. Of course Matthew’s first hurdle is just to make it here through delivery, then the next is for the NICU Dr’s to evaluate his respiratory efforts. The lungs need to be developed enough to breathe. We are waiting on flight orders to come through the Army, and of course, finding out on a Friday doesn’t make planning easy over the weekend. We are not doing very much, trying to keep Matthew happy in his swimming pool. Praying we can get a room at the R. McDonald house in Michigan.
We had a hopeful Dr Appt today. Our MFM Doctor came in smiling telling us she had good news. After consulting with Pediatric/NICU specialists at the University of Michigan Medical Center they determined Matthew is a good candidate for treatment there. They specialize in the ECMO machine (it was actually invented there) and Pediatric heart patients.. Matthew will also be put on the heart transplant list while we are there. This team has had a lot of experience with babies put on the ECMO Machine as early as 32 weeks with similar heart anomalies. We have a lot of logistics to work out to get us there and lodging. I know that we will be in the best of care there and Matthew will have expert Doctors. Also good news, Matthew’s fluid was down to about 24cm. A beautiful picture I can leave you with makes me think of Mass:
“A reading from the Gospel according to Matthew…”
Thank you to my friend, Sue who took great care of me while John went home to close up the house and send our children off to Georgia. Sue, I had a great time taking Matthew out for breakfast!
Thank you for all of your prayers. We heard from our Doctor today who was letting us know how the Cardiologists meeting went today on Matthew’s heart pictures. As of now, they really want to get us to 36 weeks. This means I need to sit and wait and not do much until then as long as I can breathe. The increased fluid has made walking and breathing and eating hard. The Doctor said if they need to, they will look at trying to remove some of the fluid (with an amnio, Heaven help me, I am a big baby) if it just becomes too much or I am in a respiratory need. We may need to consider it, even though there are risks (preterm labor and water breaking) If we can get to 36 weeks, August 25, they seem to think, if Matthew’s lungs are working or developed enough, he may have a chance. Anything sooner, and they don’t seem too hopeful. The lungs are the biggest concern for a baby with a heart anomaly like his. If Matthew is delivered and his lungs are working, then the Cardiologists can administer heart medication to Matthew to help valves that are not working properly to remain open for possible surgery or transplant.
Our dear children will be in good hands with John’s parents and we will miss them dearly. We are so grateful they will be taken care of while we sit and try and pray to make it as close to August 25 as we can.
Thank you to all the ladies at the 4Real board who have set up an around the clock prayer chain for Matthew. May God’s grace be with you all.
ETA: Thank you Laura for reminding us that from July 17, the day this started to August 25 is 40 days….Lord hear our prayer.
I was admitted to the Wilford Hall Hospital to be monitored throughout most of Saturday. The Non Stress monitor stayed strapped on and showed the baby with a baseline of 130 bpm with variations and by the evening, they took me off and said they would be back at 10 pm for vitals. 10 pm arrived and the nurse added that she just wanted to listen to the baby. I gladly lifted shirt for the monitor to hear the fastest heart beat. I said, “that isn’t normal, that sounds wrong.” After a few more minutes of listening, Matthew’s heart was showing signs of fetal tachycardia ( elevated heart beat) It was 210 and stayed there for two hours. During this time, an ultrasound machine and two doctors came in confirmed the heart beat and told me what to expect…. For a few minutes I thought tonight was the night. I called John who was staying at the Fisher house to let him know it could be at a moments noticed. They asked me my last wishes, to do an emergency c-section, if this went on too long or the baby’s heart dropped into the 80’s and hope to save the baby or let it go and deliver naturally. They then added, if he was delivered soon, he had a 10 % chance of survival. Of course, I told them I was still hopeful, but I would want them to try anything they could to save him. They left my hospital room saying they would call my MFM Doctor to let her know and I started praying the Divine Mercy Chaplet and the Rosary. Halfway through my prayers, the two Doctors retuned and said that My MFM Doctor said that Matthew’s elevated heart would be okay throughout the night and in the morning she would do an U/S and talk to me about possible heart medication if the heart stayed elevated for too many days. I kept my prayers going into the night and at the end of my Rosary, I looked at the monitor and Matthew’s heart was back to a steady 130 bpm. I was so grateful. I began to dose off ( about 1:30 am) to be awakened at 3am and told I had had two hours of steady contractions 4 minutes apart. I was wheeled off to triage to be checked for preterm labor. Contractions continued, but I was not in preterm labor. The contractions are as the doctor’s expected, due to the increased Amniotic fluid. I am definitely much more distended since they saw me on Monday. The fluid has gone up to 32cm. On Friday it was 25 cm..I was discharged from the hospital, but given orders to stay in San Antonio until I deliver. Matthew ‘s only chance of survival if his heart doesn’t fail, is to make it to 34 weeks to have a chance on the ECMO machine. I have to go three weeks without my water breaking or going into preterm labor if we are going to make it to 34 weeks. Matthew is showing signs of Hydrops, but not to a point of concern yet. The Ascities looks a little better today and the MFM Doctor thinks it may be due to getting the steroid shots. Now we just have to sit back and hope for the best. Matthew is an adorable little guy who is obviously enjoying his swimming pool. with each U/S he is either head down or head up… quite cute because I don’t feel a thing. Now my course of action is to go to the hospital each day and get monitored for an hour or two and then an U/S daily until I deliver. Thank you all for your continued prayers. I’ll update as I can.
They are sending us to San Antonio in the morning to be admitted to the hospital and receive another steroid shot to try to give Matthew’s lungs a boost. It looks like he will be delivered at a moments notice this coming week via C Section as his heart will not tolerate labor. He has gone downhill from my appt we had on Monday. He is showing signs of Ascities ( fluid around the abdomen) and early signs of Hydrops. I am tearful, but trusting. My dh will be with me and my dc wil be here with my friend Jess until grandparents can arrive tomorrow driving in from GA. Sue will update on here when we know more, please keep this darling baby boy in your prayers. They were trying to get us to 32 weeks, but now that doesn’t look hopeful. Today I am 30 weeks and 3 days.