Update 29 July 2009

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….

Pictures!

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.

“Surgical approach” plan pending…

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.

Taking Matthew to 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!

plan for now

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.

update from being admitted

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.

A few weeks too soon…

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.

Miracle needed for Matthew

today went as we sort of expected… the fluid was around part of Matthew’s heart and there was a sliver of fluid beginning to build around his abdomen. The fluid around his tummy wasn’t as much of a concern for them as was the fact that there was more Amniotic fluid present today than they would like to see. Too much amniotic fluid can result in preterm labor and or my water breaking. Matthew is not swallowing enough of the fluid which doesn’t allow his body to process the fluid. They took a lot of photos of Matthew’s heart and the Pediatric Cardiologist plans to have a major conference with a panel of Cardiologist specialists about Matthew’s heart condition and how to handle it best. Of course, Matthew is on the best by-pass in utero, but now it is coming close to decision time for the Doctors to decide what will help him the best… in or out …based on his greatest need. They want me to be seen next week here at our local hospital by the MFM Dr and then return and move to San Antonio in two weeks leaving us at 32 weeks gestation. They talked to us about giving me the steroid shots to help the lungs mature more quickly. It is very possible he will be delivered very prematurely based on his needs. Matthew continues to grow at a steady and healthy rate. He measured at 33 weeks, 5 days along giving him an estimated weight of 4lbs5ozs. I will continue to be monitored with the Non stress tests twice a week this week and next as well as the amniotic fluid check. Please join us in prayer for a miracle that Matthew will be strong enough to endure labor and hang in there while the Doctors help him breathe. I cannot tell you how greatful we are for all of your prayers. We were on a different U/S machine today that wasn’t quite as sharp as the last picture, but here are two shots we came home with of Matthew.. sweet little face…

Long weekend ahead

Well prayer warriors, I know you all have been so faithful praying for our little unborn baby,Matthew Karol, now just bordering 30 weeks… I had an NST ( non stress test) Wednesday, everything looked fine, and then today, after the fetal movement part being okay and active to the U/S of checking the amniotic fluid, the nurse/tech found fluid around part of Matthew’s heart that didn’t show on wednesday. I noticed it and pointed it out and she noticed it as well. She left to go show the MFM Dr the pics ( for what felt like 10 minutes) and returned saying, he “should’ be fine, it just wasn’t something she had noticed before, but since we have another ( our third) Cardiologist appt in San Antonio on Monday, they let me go home.. to wait it out over the weekend..

A coming home gown….

A dear sweet friend, whom I have never met in real life, but feel as if I’ve known her forever has just mailed Matthew the sweetest and very “manly” little daygown, all handsewn with prayer and love. The package arrived the night we arrived home from our Cardiologist appointment on our Anniversary. It was wrapped in simple white tissue and tied with a blue ribbon and a sticker of Our Lady of Grace.
Knowing Cheryl, I recognized immediately the three blue snowflakes on the front for the Father, the Son and the Holy Spirit and the blue is for Our Lady’s intercessory prayers. I cannot tell you how dear this is to us.
This daygown has a matching handsewn scalloped undergown with two tiny buttons on each shoulder.
We are hoping this will be for Matthew to wear home from the hospital and maybe even if he is baptized in the hospital if there is time to dress him.

Cheryl, thank you so much for your time, talent, prayers, and love for our baby boy.

Matthew at 26 weeks…

Matthew needs a lot of prayers. He needs prayers for his heart to stop swelling, his lungs to develop and have enough room to grow, and that he can make it as close to full term as possible for his heart to have a chance. As of our appt today, Matthew showed no signs of hydrops, which is usually fatal, he was 2 lbs, 9 ozs, and measured at 28 weeks.
We met with the Maternal Fetal Medicine Doctor, the Pediatric Neonatal Dr, and the Pediatric Cardiologist today. All will be present at Matthew’s delivery. we were told what to expect at delivery and what they will be watching for while he continues to grow. The very first thing they will be looking for is for Matthew’s ability to breathe. His lungs may not have enough room to expand and will not allow him to be compatible with life. He is so beautiful. It just pains us to see this darling little guy on the screen and think of him struggling to breathe. They would then sedate him and help him breath so he won’t have to work so hard doing it alone. We are at a sit and wait point. His condition is really unknown until we get there and they see him.
At 28 weeks, we will start NST ( Non Stress test) at our hospital here twice a week. If at any time, he is showing stress, they will send me to San Antonio immediately. When we reach 36 weeks, I have to move down to San Antonio to be monitored daly. The Cardiologist really wants to see if we can go full term to give his heart a chance. Anything too early, they won’t be able to help his heart as the lungs would be the first priority.
Thank you to Jess who kept our children for almost 12 hours! I cannot express how thankful we are that you had them today. Thank you to all who have called and prayed for us and for Matthew.

tomorrow….6/17

is 6/17….. very significant to us.. We were married 14 years ago. We met each other our first year in college. We were both 18. I still see the same John I saw in that college hallway so many years ago. We are best friends.
6/17 is also the number we see every where we see numbers. We both see 617 at random on clocks, on houses we like, the price of something, and more.
6/17/2008 was the due date of Mark Alexander. God had other plans for us and for Mark. Mark was delivered back to God at 18 weeks in January last year instead.
6/17/2009, we have our second Pediatric Cardiologist appointment in San Antonio. We will be dropping our children off at Jess’s house and leaving them will a cooler full of breakfast, lunch, and dinner for both families….
We will update after we return from our trip to see the Doctors. We are still praying for a miracle for complete healing of Matthew’s heart. Little Matthew is 26 weeks along and already over 2 lbs and still kicking…
PJPII, pray for us
O Sacred Heart of Jesus, pray for us.

thank you…

.. for all of the positive and uplifting comments… Usually I read them and I am unable to reply due to the tears in my eyes. Your kindness and open arms for our little baby is amazing. I have received comments in so many places I visit online. Here is just one that touched me so I wanted to share…

When I first saw the pictures of is heart, I couldn’t help but think of St.
Philip Neri. Remember how his heart was so full of God’s great love, that at his
autopsy they found that his heart had actually cracked 2 ribs! Try not to weep
over his affliction… remind yourself how much God loves your Little One and thank
Him for such a visible reminder for us and the world of this Great Love.
Those dark spots on the screen are not voids,
but spaces fashioned by His own loving hands to make room for all
the love He is filling it up with. In all that is happening with the Culture of
Death on a worldwide scale, God is working through you and your baby in a
breathtaking and amazing way.

Thank you C from MO for this reminder.
If I could quote from everyone, I would to share with all of you how generous and self giving of your time all of you are. Matthew is drawing us all closer on our knees in prayer.

O Sacred Heart of Jesus, Have Mercy on Us.

25 weeks … keep praying for a miracle…

Today I was seen for a follow up Level II ultrasound. Matthew was kicking around and measured still a week ahead.. at 26 weeks. Little Matthew’s heart is so enlarged. The Dr. said after measuring that it is taking up more than 50% of his chest cavity… which is bad for the lungs, they will not have enough room to expand fully when he tries to take his first breaths. They did say there is medicine the Dr’s can give to help.. the extent of that, I do not know. Here is one photo of Matthew’s face front view and upper chest. Notice his eyes look like he has on sunglasses below his face you’ll see a BIG BLACK CIRCLE.. that is his right Atruim ( alone) not showing in this picture are the other chambers. This makes me teary just to see how big it is.
The good news I got was that his heart was still beating strong.. 133… and that he is a healthy little fella.. at 2lbs 1-2 ozs….I was tickled to hear that fearing how tiny he will be if he is delivered early. We tried to get a 3-D picture.. here is a sweet little face in 3D
Next week we are driving back to San Antonio to see the Pediatric Cardiologist. I am sure they will compare their notes from the previous visit. After 26 weeks, the Doctors in town are planning to monitor Matthew’s growth weekly. If he appears to be going downhill, they will send me immediately to San Antonio to take the baby to try to intervene.
Dh is on TDY, so a dear friend who works in the hospital and worked with the NICU and heart surgeries with newborns was able to be there to hold my hand. It was nice to have her there to help me understand what all the Dr said. One last picture is a profile picture. Matthew’s face is pointed up and you can see his forehead, nose, and lips and chin. Below that ( on the left side of this pic) is the heart again appearing like a big black circle.

I can’t thank you enough for your prayers for Matthew. Thank you to everyone who has added him to your prayer lists and your blog buttons. I am so thankful for the intercessory prayers being said on Matthew’s behalf. God is the creator of Life. He knows His most perfect plan for Matthew and for us as a family and what we can handle. Our children are overjoyed with every kick Matthew makes under their little hands on my tummy. John and I treasure each kick and thank God for Matthew.
We love you too Matthew!

Pray for a miracle still…

At the wee hours this morning, we tip-toed out the door to head to San Antonio for our appointment with the Pediatric Cardiologist and the Maternal Fetal Medicine specialists. We laughed in the dark of the car noticing all of our dates out are when we have ultrasounds.
Three hours later, with about 5 doctors in the room all pointing to the screen and conversing together, we were left with no diagnosis. They in their 20+ years of heart care, could not diagnosis Matthew’s heart. They had never seen this condition .. ever…. They “think” perhaps the restriction of blood flow across the atruims is due to an aneurism.
Good news: Matthew has continued to grow and was kicking before falling asleep for the l-o-n-g ultrasound. For now, Matthew is on a free pass to continue to grow and hopefully reach 36 weeks before having to move down to temporary lodging for daily monitoring. Matthew does not show signs of Hydrops at this visit.

Bad news: This condition, allthough they are not sure of what is going on until further research, said that it does not look promising. They are saying that Matthew will probably have heart failure before we get to 36 weeks… ( That is 14 week away!)
There is nothing they can do for him at this time. As long as Matthew does not show signs of Hydrops, he will stay tucked away continuing to grow stronger.
If we get to 36 weeks…Matthew is a candidate for heart surgery repair once he is stable after delivery and lungs are working. The Cardiologist said the valve that would need the repair is the one “if you need to have repaired , is the one you want to have to repair.”
Thank you to Sue who came over at 5:30 am and took the early bird shift and to Jess and her mom for taking the kids all day. Thank you also to my sweet friend V, for dropping off cinnamon rolls for the crew and for my neighbor who had dinner waiting for us after our long day.
Our next date will fall on our Anniversary. We will pray for a miracle.