Great Expectations

Since the day we found out that Matthew may have Down syndrome, one of the biggest adjustments has been changing our expectations.  This has taken some getting used to for us.  J.P. and I thought we had this whole baby thing figured out.  But then Matthew came along and showed us that we have a thing or two left to learn.  My pregnancy was different because I was considered high-risk, my labor was scary, life in the NICU was all new to us, and being home with him has brought on its own set of challenges.  Some of the challenges are because of CDH, some are because of Down syndrome, and some are just because Matthew is a baby with his own set of quirks and personality. 

My friend Melissa Gamble shared the following poem/essay a few years back, and I remember reading it and gaining a new perspective on what life with a special needs child might be like.  The poem was written by Emily Perl Kingsley about life with her son, who was born with Down syndrome in 1974.  It is a wonderful metaphor for the journey we find ourselves on with Matthew.

(Disclaimer:  I would choose to go to Holland over Italy in my real life, but I didn't write the poem)

J.P. and I have tried to remain positive and optimistic, but I would be lying if I said there aren't times where we wonder how we got here.  I have always loved the baby stage, but I find myself wishing for it to go faster so that life will be easier.  I know I will look back and regret not soaking up every second of this sweet tiny little baby, but some days it is just really hard.  

Matthew is a sweet and relatively easy-going baby in almost every regard except for eating.  He has been without his feeding tube for three weeks now, but he still has his fair share of feeding issues.  He doesn't seem all that interested in food, so feeding him can be a battle.  The doctors in Kansas City have told us how much he is supposed to eat and how much they want him to gain each day.  Having these goals hanging over our heads is stressful.  I exclusively nursed all our other babies, so worrying about feeding volumes is totally new to me, and I am not a fan.  We have a weigh-in every night, and the outcome effects our mood more than I would like to admit.  Once we reach the point where we can stop stressing about weight gain, I will be a much happier Momma.  

Matthew has started the process of weaning off oxygen.  He has been on oxygen since coming home from the hospital.  Because his right lung was a little small and under-developed, he needed just a little bit of help keeping his blood oxygen level up.  Having him on oxygen isn't the worst thing ever, but it will be so wonderful to have it gone.  Imagine having to carry your purse around your house with you everywhere you go.  That is what it is like to carry his oxygen tank around.  It is a very small tank that we switch out once a day, and we carry it in a bag that has a shoulder strap. It just makes him a little less portable than a a typical baby. He currently is allowed to be off his oxygen while he is awake.  He is doing very well with that, so we are hopeful to keep moving towards being oxygen free in the next couple weeks.  Once he is off oxygen we will have a totally wireless baby with a naked face!! 

Matthew turned two months old.  With all our other babies the time flew by.  With Matthew, it seems like he has been here for SO much longer.  J.P. and I both said "only two months!?"  I guess its because our whole lives changed long before he was born. He woke up one morning not too long ago and gave me the biggest smile ever!  He is still a little stingy with them, but he has the most precious smile that lights up his whole face.  One big smile from him can make all my stress and frustrations melt away.  

We go back to Kansas City on August 4th to visit the Down syndrome clinic.  We have a four hour appointment in which we will meet with a number of different specialists.  There is a long list of health issues that are common in people with Down syndrome, and the people at the clinic know just what needs to be checked.  He will also have a chest X-Ray during our visit to check that everything from his surgery is still in good shape.  After that appointment, we won't have to go back to KC until he is six months old.  

The hardest part is hopefully behind us, but we know there is still a long road ahead.  We have been told by so many people that Matthew will figure it all out, just on his own time.  I am sure this is a lesson in patience that he will be teaching us for a very long time.  While we can't wait to see how Matthew grows and what all he accomplishes, we need to take a deep breath and remind ourselves to enjoy him as he is right now.  

Mighty Matthew at Home

Ever since I heard that Matthew would have to be born somewhere besides Tulsa I focused all my energy on getting him home.  Having to leave my home and my family for two months was, without a doubt, one of the hardest things I have ever had to do.  Whenever I was having a rough day I would tell myself "someday you will be home as a family of seven and all of this will be worth it."

My someday became a reality on June 13, 2017.  Bringing Matthew home was one of the happiest moments of my life.  Being able to kiss all five of my babies goodnight every night is not something I will take for granted ever again.

I had been dreaming about Matthew's "newborn" pictures at home since before he was born.  I knew his newborn days would be spent in a hospital, and that he wouldn't be a tiny sleepy newborn by the time we got home.  It was so important to me to document this extremely special time in our lives.  To celebrate all he went through to get here.  So I hired a photographer to come and capture these special moments.  Here are some of my very favorites from our session with Ashley Alexander Photography.

I am working on an update about Matthew, but wanted to share all of these pictures.  I will never be able to look at them without feeling tremendous love and gratitude for my family and being with the ones I love at home!

PS- Thank you so much, Ashley, for fitting us in and capturing this time in our lives!

Life At Home

We have been home for more than a week, and we are getting into a little bit of a routine.  By six weeks old, most parents have gotten into a groove with their baby.  Because he was in the NICU, we are getting a late start.  He is six weeks old, but we have just survived our first week at home with five kids!

I will start off by saying that our boys are absolutely amazing with Matthew!  I could not dream of better big brothers for him.  Every morning when A.J. wakes up, one of the first things he says is "Baby Matt!"  He loves to bring him diapers and burp rags and especially loves to stick a Paci in his mouth.  Ben is so sweet with Matthew and says "Matthew is so stinkin' cute!" multiple times a day.  Jack and Luke have both been amazing baby holders and fight over who gets to have tummy time with Matthew. They also are great at keeping A.J. entertained while I tend to Matthew.  He is a lucky little guy to have so many big brothers looking out for him.

Matthew has adjusted to life at home and is exceeding everybody's expectations yet again.  He has been eating full bottles for almost a week now!  He still has his feeding tube in, but we have only used it once in the last five days (thanks to a stuffy nose).  We don't want to jinx ourselves, but we feel like he has this eating thing figured out!  He is a great sleeper, and would maybe sleep all night if we let him.  The doctors have ordered us to feed him every three hours, but we have accidentally slept through our alarm a time or two and Matthew has not been the one to wake us up.  Waking up a baby in the middle of the night is a bit like torture, but hopefully we won't have to do it much longer.

Trying to run a household and take care of a newborn and four other kids is taking a bit of getting used to on my part. I always forget just how much feeding a baby consumes your life!  I spend about half of each day feeding, pumping or preparing bottles.  The fact that Matthew isn't quite as portable as other babies just adds another challenge.  Thankfully, we have had so much help with the boys and meals brought to us almost every night.  I can't imagine trying to cook right now- I barely get the dishes done!  Each day gets easier, and I feel like we are finally getting a tiny bit of a routine around the house.  J.P. has been so wonderful.  He became much more domestic while I was in Kansas City.  He can also help with the middle of the night feedings for the first time ever since Matthew drinks bottles!  I am hoping to get Matthew out of the house a bit next week and try to get back to some of my normal mom duties.

(Matthew's one month picture at home.  A few days late, but worth the wait)

We go back to Kansas City next week for a checkup.  We are hoping to get the feeding tube out for good and start weaning his oxygen.  We are hopeful that we won't have to go back too frequently and that Dr. Daley can take over a bit from here on out.

Home Sweet Home

We are home!!  Matthew was discharged last Tuesday, after 35 days in the NICU.  We are beyond thrilled to be home and be all together as a family.

As everything with Matthew has been, it was a rollercoaster ride to get him home.  The Thursday before we came home there was a doctor in rounds that I had never seen before.  I lovingly refer to him as Hero Doctor, as I never caught his name and didn't see him again.  He is the one who said Matthew doesn't need to be in a hospital, and that we could go home with the NG tube (feeding tube in his nose).  The other doctors agreed and said we could go home as early as Monday!  It was one of the happiest moments of my life!  All of the stress about bottles and hospitals melted away.

J.P. and the boys came up Thursday night so J.P. could be there for rounds on Friday.  I stayed with the boys while J.P. went to the hospital Friday morning.  He texted me later to say that Hero Doctor wasn't there and the plan had changed. They wanted Matthew to get a G tube (surgically inserted feeding tube) before going home.  They wanted to see how he did with bottles over the weekend and then make a final decision on Monday. That meant there was no way we were going home on Monday, and all the stress about eating came right back.

 J.P. and I felt caught in the middle of a doctor debate about the safety of sending a baby home with an NG tube.  The major risk is that the tube is not placed correctly and then the baby aspirates while being tube fed.  This can be deadly and is not something to be taken lightly.  However, there are ways to double-check that it is in the correct place. The pros of the NG tube are that it is very easily removed- you literally just take it out.  On the other hand, the G tube has its pros and cons as well.  The major plus side of the G tube is that there is almost no risk of user error.  The downside is that is required another surgery and it is slightly harder to remove when it is no longer needed.  We picked the brains of the nurse practitioner and our nurses over the weekend.  We went back and forth on what we thought was best for Matthew.  Ultimately, we both agreed that we weren't ready to sign Matthew up for another surgery if it wasn't absolutely necessary.  J.P. and I were willing to take every precaution to make sure the NG tube is used properly, even if that means having to take Matthew to get an x-ray to check placement if we aren't 100% certain it is in the right place.  And if he still isn't eating all his bottles in two weeks when we come back for his checkup, we will have a G tube put in then.  Our team of doctors begrudgingly agreed and said we could go home the next day!

Tuesday was one of the longest days of our lives.  We got to spend the night with Matthew in a parent room in the NICU on Monday night.  They have parents do this to make sure they are comfortable with all the care that comes along with bringing home a baby who has special equipment.  Matthew has oxygen and the NG feeding tube.  Spending our first night with Matthew was wonderful, but we definitely felt the first little pangs of sleep deprivation.  J.P. headed back to our Kansas City house in the morning to pack up the car and make sure the house was ready to be turned back over to its owner.  We had NO idea how much stuff we had accumulated in two months!  We filled up both of J.P.'s parents' cars on Monday when they took the big boys home, and then had our car stuffed to the brim.  There was barely room for Baby Matthew and all of his hospital loot in there.

We survived the four hour car ride and our first tube-feeding mishap on the way home.  Matthew was not a big fan of the car ride, but as long as we kept going faster than 60 mph he was happy.  He has a need for speed!  We stopped in Joplin to feed Matthew.  He ate about half of his bottle and I hooked up his tube feed in the back seat so we could get back on the road.  When his pump beeped at me to tell me his feeding was complete I went to unhook it and realized that it had come unhooked and leaked ALL over his carseat.  I just fed his carseat half a bottle!  This parenting thing was all on us now.  No nurses around to help!  We got Matthew all fixed up and finally made it home around 8:30pm.

It felt SO amazing to be home!  Happy tears galore.  But with that also came an overwhelming feeling of "Oh my gosh, now we have to take care of Baby Matthew and all the other boys too!"  J.P. reminded me to take a deep breath and enjoy just being home.  Before I went to bed, I walked into each boys room and kissed them goodnight.  It was everything I had been dreaming of for so long.  All seven Szafranskis, under the same roof, finally!

One Month Old!

Baby Matthew is one month old!  He weighs 7 pounds and 9 ounces.  He is a very alert little guy who loves to socialize.  In fact, he would rather look all around instead of drinking a bottle.  He loves his mobile in his crib and likes to be held and snuggled.  It is easy to get sucked in to his big dark eyes!

We  have some BIG news:  We are going HOME this week!  All of the details are still being worked out, but the doctors decided that he does not need to be in a hospital, and we can bring him home.   He will still have a feeding tube and probably oxygen, but we are up for the challenge of those extras if it means we get to be at home.  We will know much more on Monday morning after rounds with his whole team.  We could not possibly be more excited to get Matthew home where we can all be together as a family of seven!

Matthew's one month photo shoot was very brief because of the hospital setting and the extra accessories on his face. He does not find the hospital chair to be very comfortable, and the extra cords and wires were getting in the way. I will do a much better one once we are home- it will be a few days late, but I think it will be worth the delay.  I can't wait to get pictures of him not in a hospital!

It is still a bit surreal, and I don't know that I will believe it until we walk out the hospital doors.  We have finally made it to the home stretch, and we will be home in a matter of days!   We are so proud of this little man and all he has been through in his first month of life.  

Week Four: Bottle Service

Matthew is four weeks old!  In some ways, I can't believe he has only been here for four weeks and in other ways it has flown by.  While I know that we are closer than ever to getting to go home, it still feels like something that is far off in the future.



Last Wednesday I finally worked up the courage to ask a question I had been avoiding: Just how long will you keep him in the hospital if his only malfunction is not eating on his own?  The doctor told me that she fully expected him to be here for another 2-3 weeks.  I wanted to cry.  She admitted that it is so hard to see a baby who looks so healthy, and acts completely normal, and think that he needs to be in the hospital for so much longer.  She said that many Down syndrome babies can take about a month to learn to eat on their own, and adding in the CDH just adds another complication to that.

As I mentioned in my last post, our lease on our house here is up on June 16.  I mentioned that to the doctor and she said we would investigate a transfer to Tulsa if he still needs to be in the hospital working on feeding at that point.  I have been working with a social worker over the last week, and we have a transfer to St. John NICU approved, should we need it.  We are still hoping that he will get this whole feeding thing figured out between now and then.  I want nothing more than to bring Matthew home.  But if I can't bring him home, at least I can go home and bring him to Tulsa.  There is an end date to our stay in Kansas City, and that helps my mental state tremendously.  That has been one of the hardest parts about this journey for me:  not knowing when this will be over.

We continued with the two steps forward and one step back that we had been warned about.  Matthew had been lingering around 50% oral feeds for over a week.  That means that over the course of 24 hours, he would eat about half out of a bottle and be tube-fed the other half.  He would have one feeding where he would take 85% and others where he would barely take any.  So I finally decided to try a new bottle.  The hospital only has a few options, and we had tried all those.  I ordered a Nuk bottle on Amazon and brought it up to try on Saturday.  He did about the same for me at his 3:00 feed, so I asked the nurse to try it again at 6.  When J.P. came back to the hospital for the bedtime bottle he couldn't believe his ears: Matthew drank his whole bottle! His first full bottle!!  Maybe this new bottle was the answer to our prayers.  Matthew took an entire bottle for J.P. at 9:00 that night too.  I felt like a kid on Christmas Eve trying to go to sleep that night.  Maybe we will finally be out of here soon!?  Matthew took another three full bottles on Sunday.  I thought he had it figured out and we had turned a corner.  However, since Sunday night he has been in a slump.  No more full bottles.  I got my hopes up so much, and now I feel so defeated.  This little guy CAN take a full bottle.  He just seems to get bored with it after about 10-15 minutes.  He has everybody stumped with what to do.

Matthew had another little hiccup Monday with regards to his oxygen.  After a few days of his cannula not staying in his nose and him doing just fine whenever it was out, the nurses talked to doctors into taking it off.  He had about 30 minutes without it and started dropping his pulse oxygen levels.  He was hanging just below the normal range, so they put it back in and his numbers went back up.  They will try to take it off again in a few days.  It isn't a big deal, it is just frustrating to be moving forward and then have to go back.  I did get one picture on my phone with his almost-naked nose. I can't wait to have his face free of everything!

Our plan for the week is to keep working on bottles and then re-evaluate at the end of this week.  We will decide if we should move forward with the transfer to Tulsa, or go full-steam ahead on getting this guy discharged.  If he decides to go back to chugging bottles, we should be good to get out of here sometime next week.  If he stays in a slump, he will probably be heading to Tulsa via medical transport.  The next three days are so critical in deciding where we go from here.

Throughout this journey we have been overwhelmed with love and support from so many people.  J.P. and I frequently talk about how lucky we are to be surrounded by so many wonderful people.  We are so excited to bring Matthew home for everyone to meet.  Matthew will be arriving in Tulsa within the next two weeks, one way or another.  Thank you for all of the love and prayers along the way!

A.J. finally got his chance to hold "Baby Matt"

PS- Check back this weekend for pictures from Matthew's one month photo shoot!  He will be one month old on Friday!

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!