Week Three: Slow and Steady

Mighty Matthew is three weeks old!  It is so fun to finally feel like I know him.  I know he likes to be held upright on my chest.  I know he does not like being forced to wake up by the nurses. He loves looking at the mobile over his crib.  He can get very mad very fast, but usually goes back to happy just as quickly.  Overall, I would say he is a pretty happy baby.  I absolutely can not wait to get him out of this hospital and be able to have our own routine.

His goals for last week were to work on bottles and wean his oxygen.  His oxygen got turned down to .1L on 100%, which is the lowest setting before taking it off.  They will try a room air test, meaning no oxygen, when he gets closer to going home. He may come home with oxygen depending on how he does.  At this point, breathing is not a barrier to us taking him home. He has had no breathing problems at all over the last week, which is amazing for a CDH baby.

As far as bottles go, that has been a struggle.  He is offered a bottle every three hours with 56mL of milk in it.  When he started he would only take about 10mL before getting too worn out or angry.  Over the weekend, he is up to taking around 40-48mL on a good feeding, and in the 20s when he is tired or irritable.  He is making progress, it just seems so slow.  Getting so close, but not consistent, is frustrating.  I want him home SO bad, and to know that this is the only thing standing in our way makes it even more frustrating.  I feel like something clicked with him on Sunday and he is figuring out that eating isn't so bad.  Hopefully I am right and he is downing bottles consistently by the end of this week.

The past week has undoubtedly been the hardest on me.  The first two weeks were filled with adrenaline and so much progress that it kept my spirits up, even though it was a rollercoaster ride.  The last week has been slow progress, and my energy levels are tapering out.  It was also the big boys' last week of school.  I missed Ben's kindergarten graduation.  I couldn't be the fun Mom with something fun planned on the last day of school.  Instead, my sweet boys got in the car and drove four hours to see me and Matthew in Kansas City.  They got last day of school snuggles with their baby brother and didn't complain one time. Knowing it is summer time and we aren't getting to do all the fun summer things is hard.

I miss home.  I miss tucking my kids in every night.  I miss doing anything normal.  When I am at the hospital everything revolves around feedings and pumping and his hospital schedule.  When I leave the hospital, I spend the entire time feeling guilty that I am not there.  Is he crying and I am not there to hold him?  Is he taking his bottle as well for a nurse as he would for me? I know it is not physically possible for me to be at the hospital 24 hours a day, but it kills me to not be with him.   And when the big boys are here then I feel guilty no matter where I am.  I want to be with all five of them all the time and it just isn't possible.  The little moments of all seven of us together are very fleeting, but they make me so happy.

Matthew got a room upgrade over the weekend.  His old "room" was in a very busy part of the NICU with curtains as walls.  It was loud, busy and there was no privacy at all.  His new room has a big window and three walls!  It is much larger, quieter and more private.  I can't tell you how excited I was to have natural light!  I set my camera in the windowsill for a family picture just to celebrate.  I love that you can't really even tell we are in a hospital.  I just hope they aren't planning on us staying in this room for too much longer.

The only goal for this week is to keep working on bottles.  Once he gets that down we will be running out the door as soon as they will let us.  I had set my mental goal for leaving this Friday, but I don't think that is realistic at this point.  I need to switch gears and hope for some time next week.  Our lease is up on our house on June 16, but we are hoping to be home before then.

A few other health notes about Matthew:  He has good muscle tone!  Babies with Down syndrome typically have low muscle tone.  We have had several different people tell us that Matthew has great tone.  We were so happy to hear this, because we need him to be strong!  He will have to sit in his carseat for four hours before we can go home, and good muscle tone will hopefully help him to pass that test!  He had a follow-up echo cardiogram today and his heart is looking good.  We are SO thankful for a healthy heart.  This little guy has been through so much, and avoiding heart problems is a huge victory for any Down syndrome baby.  We also got the results from his genetic testing.  He has Trisomy 21 (Down syndrome) with no other known genetic problems.  This was also great news!  They also told me that he is a boy- I thought it was funny that they clarified that while giving me the summary.  His hair has been a big topic of discussion.  It looked brown at the beginning, but we may see a little bit of red coming through.  He just wants to keep us all guessing!

I have been in Kansas City for six weeks now.  I am so ready to bring this baby home.  Please continue to pray for Matthew!  We have been so touched by everyone who has called, emailed, sent a meal or a gift, and said prayers.  We are surrounded by the most amazing people!  We can't wait for ALL of you to meet Matthew!

Week Two: Wow!

Wow!  What a difference a few days can make in the life of a NICU baby!  Matthew is nearly unrecognizable compared to just a few days ago.  He is making amazing progress and we are getting more and more excited to bring him home.

(This picture was taken Wednesday night after having his chest tubes removed.  Almost all of these wires are now gone!)

Last weeks goals included getting rid of his chest tubes, getting his food via milk to his tummy, and getting off the ventilator. He had all of his chest tubes out by Wednesday: check!  He got bumped up to "full feeds" (meaning no nutritional supplements) on Thursday: check!  Getting off the ventilator, however, was a bit more of a challenge.  He had been doing SO well, so they decided to extubate him on Thursday.  Well, things did not go as planned and it turned very scary very fast for our sweet little baby.  His blood oxygen started plummeting and a whole team of people rushed in.  It was one of the scariest and most helpless moments of my life.  Luckily, there are always amazing doctors around and they got his breathing tube put back in and got him stable.  We had been warned that things in the NICU were often two steps forward and one step back, and that was our reality check of just how fragile our little guy is.  They figured out what went wrong and started him on some steroids and told us they would try again on Monday.  We left the hospital feeling discouraged, it felt like a huge setback in his progress.

After he got all his chest tubes out, J.P. finally got to hold Matthew on Wednesday night!  It made me SO happy to see this precious moment.  Matthew was awake and happy and just staring his big dark eyes up at his Daddy.  I had made it all day Wednesday without crying, but I have to admit I shed a tear or two of happiness seeing them together.  Matthew snuggled right into J.P.'s arms and fell fast asleep.  It was wonderful!!

The big boys all got in town on Friday evening and were so excited to see Matthew!  It is crazy and hectic when they are all in town, but it makes my heart so happy to be all together, even if it is only for a few minutes at a time.

On Saturday morning we were greeted at the hospital by an unexpected surprise: they decided to try extubating Matthew again.  J.P. and I were both so nervous after the last time went so horribly wrong, but hopeful that it would go well.  Everything went very smoothly, and they even hooked him up to a lesser respiratory support than they were planning on the first time.  Yay!  No more breathing tube!  And now we can hold him whenever we want, which is the most amazing feeling in the world.  He is still on oxygen via a nasal canula, but we can see his face better and all of his cute little expressions that we couldn't see before.  His cry is still hoarse from the breathing tube, but it is so wonderful to hear every little noise he makes.

After waiting patiently for twelve days, all of the big boys got to hold Matthew on Sunday!  They were each so sweet with him and showed their big brother expertise by holding him just right and being so gentle.  Even A.J. gave him a "hug" and was so loving and gentle.  It was one of those moments where I thought my heart may explode from love and happiness.  Matthew is so lucky to have a whole crew of big brothers to love and protect him.

After so many changes in the past week, I can't wait to see what is in store for the week ahead.  Goals for this week are to work towards getting all of his milk orally and to wean him from oxygen.  He started bottles on Sunday, and is doing ok with them.  He has a feeding tube in his nose currently to help get the full amount.  Babies with Down syndrome often have a hard time eating, and being on a ventilator for the first eleven days of his life also causes a delay.  Weaning him from oxygen will be a slow and steady process.  Matthew is in charge of how quickly things go from here.

A couple of other big changes for Matthew include wearing clothes and sleeping in a crib!  What a big boy!!

(This was immediately following his successful extubation.  He has since had his "unicorn horn" removed from his scalp)

Matthew's First Week

Mister Matthew, as he is known in the NICU, is one week old!  He has definitely had the most eventful first week of any of our babies.  He continues to amaze us with his strength and spirit.

Matthew had a whole fan club in town this past weekend to meet him.  My brother's family came in from Tulsa and J.P.'s sister and future fiancé came in from Dallas (no pressure, Aric).  J.P.'s parents also brought the boys up from Tulsa.  It was a weekend full of family, which was so good for our souls.  Everybody got to spend some time with Matthew, and he showed his eyes to a lucky few.  He likes to keep those under wraps for the most part.  We had a big pizza party in Matthew's honor on Saturday night with my sister and her family and everybody else in from out of town.  Getting out of the hospital for even a couple hours is necessary for our mental well-being.  Being surrounded by family means more to us than anybody will ever know!

Since surgery, Matthew has been very stable and doing well for the most part.  He had to have an additional chest tube put in the morning after surgery, but those minor setbacks are to be expected.  The nurses have done a wonderful job of managing his pain and making sure he is super comfortable and well taken care of.  Can I just gush on NICU nurses for a second?  They are the most amazing people in the world!  Every single nurse Matthew has had has been so sweet and incredible both with him and J.P. and me.  We are still so new to this NICU thing, and there is SO much to learn.  They have all been so wonderful about explaining everything they are doing and why they are doing it.  They listen to us if we think something isn't right and keep us informed on all of his progress.  We are getting to know a few of them quite well, and it is so comforting to know that he is in such good hands when we aren't there.

The goals for Matthew this week are to wean him off the ventilator, get him eating real food (through a tube that goes straight to his tummy) and get those chest tubes out.  Those are some lofty goals!  I will be the happiest Momma in the whole world when he gets his breathing tube and chest tubes out.  Those are the major barriers to us being able to hold him.  And I am also dying to see his whole face without his neobar (which holds the ventilator tube) being in the way.  To this point, I have only gotten to hold him twice, and J.P. hasn't gotten to hold him at all.  Being able to hold him whenever we go up there will be like heaven!  So keep the prayers coming that he can meet some of those goals this week.

We had our whole Szafranski Seven together on Sunday for the very first time.  It only lasted about five minutes, but it was a little reminder that someday we will all get to be together.  Matthew has the best big brothers in the whole world!  Ben read him a little book that he wrote.  Jack and Luke were so sweet talking to him and touching him wherever they could lay a finger on him (which isn't very many places because of all he has going on).  A.J. blew him a hundred kisses during the short time he was back with him.  Matthew is so loved, and we can't wait to bring him home to our crazy house!

 While we try to stay as positive as we can, I have to admit that this is SO hard!  It is hard to be away from home, hard to keep saying goodbye to my big boys, hard to take care of myself while trying to spend every second I can with Matthew, hard to see him cry and not be able to just scoop him up in my arms and comfort him.

It has been a rollercoaster of a week, but we are definitely on the right track.  Every day is a day closer to bringing him home.  We are trying to celebrate the little victories along the way and keep our eye on the big picture. We still have no idea when we will get to come home, but hopefully it is a matter of weeks and not months.  We just need him to eat and breathe on his own and get stronger every day.

Successful Surgery

Matthew's surgery is complete and he did amazingly well!

J.P. and I came down to the NICU at 6:45 this morning so we would be here to meet with his surgeon and anesthesiologist.  The surgeon, Dr. Oyetunji, came in and introduced himself and explained how he planned to go about surgery.  He said they were hoping to be able to do everything thoroscopically, with only a camera and a few very small incisions.  He asked if we had any questions and then went back to get ready.  The anesthesiologist came to get Matthew and take him to the OR.  It took a whole train of nurses to get all of Matthew's equipment rolling down the hall towards the OR.  It was hard to watch them go, but also a huge relief to know that this is the big major thing we have been dreading for months, and it would soon be behind us.

A nurse called to give us updates throughout the surgery.  I am still an in-patient, so J.P. and I were able to wait in my room.  Luckily we were distracted by so many of our friends sending us pictures of our big boys enjoying field day at school!  It helped to make the time pass relatively quickly and put smiles on our faces.  We finally got a call that they were finishing up surgery and the surgeon would be up to talk to us soon.  He said everything went very well and that they were able to do everything thoroscopically with only four small incisions- the largest of which is only 1/2 centimeter wide.  They were able to simply sew up the diaphragm without using a patch.  Everything was the absolute best case scenario.

About an hour later we finally got to see Matthew back in the NICU.  He looks almost the same as when he headed out this morning, but with a couple extra tubes.  We have been with him all afternoon, and he has been sleeping peacefully the whole time.  His vitals are all doing well and they are slowly weaning him back to pre-surgery levels on his ventilator.  He is exceeding everybody's expectations here at the hospital!

They did a chest X-Ray when he got all settled in the NICU to make sure everything was in the right place.  The image above shows the comparison of his chest X-Ray before and after.  The difference is astounding!  You can easily see how the liver was up crowding his lung on his right side (the left side of the picture).  Most babies who have CDH have a very small lung on the affected side.  Matthew's appears to be almost full-size.  In fact, the only issue they had during surgery was that his lung was so big that it was getting in their way a bit.  We feel so lucky to be on the good side of all of the CDH statistics.

Mighty Matty continues to amaze us and all of the doctors and nurses here.  We hope his recovery continues to be smooth, but we know there will likely be some bumps along the way.  From my point of view, every tube that comes out along the way will be a small victory and a step towards getting him home.  We absolutely can not wait to have our entire family all under our roof in Tulsa!  We have a ways to go, but we are moving in the right direction.

I am being discharged today, so J.P. and I will be back at our little house.  The big boys are coming up for the weekend.  We hope they will each get to spend a bit of time with Matthew and maybe read him a book or two.

Thank you for all the texts, emails, phone calls and prayers.  Each and every one of them is so appreciated!

Surgery Moved

Matthew's surgery was scheduled to start at 1:00pm today.  At 12:50 his nurse received a phone call that another emergency surgery came up and Matthew's would be delayed.  We were thankful that Matthew is stable and not needing emergency surgery, so we rolled with it and embraced the extra time to hang out with him.  A little after 3:00 his nurse called to find out when he would be going back and we learned that it wasn't going to happen today.  While it is SO frustrating to be mentally ready to send him back for this major surgery, we have to believe that everything happens for a reason.

Matthew's surgery is now scheduled for 7:30am tomorrow.  He is the first one on the calendar, so his surgeon should be fresh and ready to give Matthew his full attention.  We are so anxious to have this one major item checked off the list and be on the road to recovery.

The plus side of the delay is that his nurse felt so bad for us that she let me hold him for an hour and a half skin-to-skin.  It takes a lot of effort to move him out of his little nest, including several nurses, so it is not something they offer up frequently.  It felt so wonderful to have him in my arms!  He was pretty happy to be there too.  He slept the entire time and all of his vitals indicated that he was 100% content.  So while J.P. and I felt a bit of frustration at having surgery moved, I think Matthew was perfectly happy with the way the day turned out.

In other news, I will be discharged from the hospital tomorrow.  I am usually so anxious to get out of the hospital and get home, but it has been so nice to be so close to Matthew, and I know leaving him here is going to be so hard.

Please keep Matthew and all of his doctors and nurses in your prayers tomorrow!

Surgery Scheduled

Matthew will have surgery tomorrow afternoon to repair his diaphragmatic hernia.  It will be a long day, but it will be one major item checked off the to-do list to get Matthew home!

I was able to hold Matthew last night for the first time!  It took three nurses to get him into my arms, but I got to stare at him for an entire hour.  He was still all bundled up in his "nest" to keep him comfortable and to keep all of his cords and wires in order.  It was heaven to have him in my arms and to study all of his little features.  He has the sweetest little nose you have ever seen, teeny tiny eyelashes, and super long and skinny fingernails.

Today has been a fairly quiet and restful day for the three of us, which we all needed!  Please keep Baby Matthew in your prayers that his surgery goes smoothly and he has a relatively easy recovery.

Welcome Baby Matthew!

After a very long and slow labor, Matthew arrived on May 9 at 3:12am.  He came out and gave a couple of big cries, which was music to our ears.  They immediately took him into the adjoining room and got him put on a ventilator and assessed him.  J.P. was able to go with Matthew and come back and tell me what was going on.  While it definitely wasn't my ideal birth scenario, it was exactly what was expected for Matthew and there were no major surprises.  All of the doctors and nurses were wonderful and made sure that he got here safe and sound.

After about 2 hours of getting him stable and all taken care of they brought his little bed over to mine and I finally got to meet Matthew!  It was both one of the happiest and one of the most heartbreaking moments of my life.  To see him and know that he is here and safe was so wonderful.  But to know that I couldn't hold him and could only stroke his little cheek was so hard.  He only got to stay with me for a couple of minutes, but I am so grateful that I got to see him before he was whisked away.

J.P. and I were both deliriously tired by that time, but were both able to get a little power nap in before the sun officially came up today.  It is amazing how a good hour of sleep can feel when you have been up for nearly 24 hours!  We were both so anxious to get over to the NICU and check on Matthew this morning.

J.P.'s parents, along with our four boys, all came to meet Matthew before heading back to Tulsa today.  We weren't sure if he would be stable enough for his brothers to meet him this trip, but Matthew did everything he needed to do so he could meet his brothers!  This moment, right here, is one of the major reasons we chose Children's Mercy.  These boys have made so many sacrifices for Matthew already, and to see them all together makes it all worth it.  A huge shoutout to the NICU staff for letting us break the rules, just this once, so they could all meet him together!  A.J. was not a big fan of the NICU, so he hung back with Gram and Pops, but he did get to meet Matthew and blow him some kisses.

Today has been a day full of pokes and prods and tests for Matthew.  He had an echocardiogram this morning to check on his heart.  While we have not heard from the cardiologist yet, all the other people around said everything looked very good from their point of view.  If we get the all-clear on heart issues, this would be a huge victory for Matthew's prognosis.  He then had a CT Scan to verify the diagnosis of Congenital Diaphragmatic Hernia (CDH).  Without going into too much detail, there was a possibility of it being an eventration of the diaphragm which would be a separate treatment plan.  However, the CT Scan shows that is is most likely a hernia, or hole in his diaphragm.  This means Matthew will have surgery very soon- hopefully later this week.

We had a wonderful meeting with the neonatologist, Dr. Petrikin.  He is from Tulsa, and J.P. has known his family for years through church and school.  What a small world!?  He went over everything with us from how he is doing right now to what we can expect in the weeks to come.  He is overly impressed with how well Matthew is doing, and has a very optimistic outlook on Matthew's prognosis.  Matthew is defying all the odds for CDH babies.  We were so afraid that having Down syndrome along with CDH might cause conflicts, but so far everything is going better than anyone could have expected.

We are so thankful for how well Matthew is doing at this point in time, but we know a long road lies ahead.  We could feel all of the love and prayers coming our way, so please keep them coming in the days ahead.

He's Here!

Matthew Brennan Szafranski was born at 3:12am, weighing 6 pounds 4 ounces and 19 inches long.  He is doing well and is being cared for by some amazing doctors and nurses.  We will update more after we get a little bit of sleep!

Final Sneak Peek

The countdown to baby is on!  Six more days at the very most.   I am scheduled to go in on Monday at 7am to be induced, if he doesn't decide to make his appearance on his own before then.  I thought I would be more nervous, but I am mostly excited to finally meet him!  I am sure there will be a rollercoaster of emotions over the next week, but as of now I am in a good place.  I am optimistic about his health and very confident that we are in the right place for him.

I had my last doctor's appointment today, and got my final peek at Baby Matthew.  He passed his biophysical profile again in record time.  The ultrasound tech even said she had a decent view of his right lung (which is the side that is of concern).  He loves to have his hands up by his face, so it is hard to get a good picture.  We got a tiny glimpse of a grin today, and I can't wait to see it in real life!

ALL of my boys came up to Kansas City last weekend to see us!  A.J. was SO happy to see his brothers.  It rained the entire time they were here!  We were supposed to go to a Royals game on Saturday evening, but it got rained out.  We are hopeful that we can make another game before our time in KC is up, and who knows, maybe Matthew can log his first baseball stadium sometime this summer.
Over the next six days I plan to soak up all the A.J. snuggles I can get, and spend a fun weekend with my other boys.  We appreciate all of the prayers, meals, carpools, texts, gift cards and support.  I really can't explain how much love we have felt from near and far.  We feel so blessed to bring Matthew into this world surrounded by so many people we know will love and support him and our entire family.