I wrote all about my sweet Joseph for Down syndrome awareness month. With the upcoming Down Syndrome Day (3/21) I thought posting this here would be a good resource for anyone facing a Down syndrome diagnosis. Before reading ahead at all, there is nothing I would change about my sweet boy. I wish he didn’t have to experience the health problems that have/will come, obviously. He is the best thing that has happened to our little family.
I don’t usually participate in social media months, but this is an extra special one. October was Down syndrome awareness month and, most importantly, the month of the Holy Rosary.
In January I gave birth to my 4th baby. My miracle man, my gentle warrior, rocking an extra chromosome. I can’t believe the world tells us to fear this diagnosis. The five weeks we spent in the NICU, the rosary was the greatest time of every day. He would peek his little head up and smile all throughout our daily rosaries.
Little Miracles
They warn that a Down syndrome diagnosis can be a roller coaster… When I was pregnant with Joseph we were told there was a 9/10 chance that he would have Trisomy 21. During an ultrasound they told us that there was something wrong with his heart and that we would have to see a specialist *as soon as possible* (because they have to “take care of” babies by 24 weeks in NY/CT) to be certain about how serious it was. They said if he makes it to term he would have to have surgery immediately and we would have to go into NYC for delivery/surgery.
We asked our rosary group and whole family to pray for his heart and a few weeks later when we went to the cardiac specialist his heart was looking great and we were cleared for birthing center delivery! In that moment we thought, maybe we are the 1/10 and he would be completely healthy.
In the third trimester we went for the last ultrasound. The baby measured small at the last few checks so we had been asking everyone to pray for him to grow. The doctor was very quick, said something about his stomach (literally, he said there might be “something wrong with his stomach”), but didn’t elaborate. We assumed it was double bubble which our nephew had in utero and it resolved by birth, so we didn’t think much of it.
When I went to see the midwives next they said he was now measuring bigger than expected and gave a name to the stomach issue- duodenal atresia. They said that I would no longer be able to give birth there. I would have to have the baby in the hospital that has a NICU and they wanted me to be induced around 38 weeks. They gave no warning that I may go into labor early (even though that is very common with duodenal atresia because the baby doesn’t swallow the amniotic fluid- waters break early).The prayer requests were flying again!!
We were back to waiting for birth to really know anything for sure. What we did know is that no matter what this baby would be loved and we would do whatever we could to keep him safe.
On this snowy, slushy morning my mom came over to watch the kids while I picked my husband up from surgery. Plenty of time to recover we thought, 6 weeks before the baby is due.
An hour after we got home, I put the baby down for a nap and my water broke. Thank God my mom was there and brought me to the hospital.
Joseph was born about 12 hours later and I knew as soon as I saw his sweet little face that the blood test was right and we were now part of the lucky few.
Baby boy’s first day was pretty wild. It was confirmed that he had duodenal atresia (very common in Down syndrome). He had to be transferred to a hospital an hour away for surgery immediately.
While daddy was at home praying about what to name him, I was signing papers, calling our priest to come baptize him and getting ready to get him into the ambulance.
My husband had a few ideas for names, but when he said Joseph I knew that was the right one right away. I went over to his giant ambulance bassinet and called him Joseph. He stuck his little hand out of the round window and let us know that was his name.
My mom drove me straight up to the new hospital and so our NICU journey began.
Our priest came that evening to baptize Joseph in the Latin rite and give him the sacrament of the sick. His incredible Godparents came as well.
When they arrived I was as pale as a ghost and when they left all of the color came back to my body and I felt totally normal. Somehow that evening everything healed and despite not having slept in days and having a baby 20 hours earlier, my body felt as if I had given birth months before. It was like a miracle.
Connecting/Preparing for surgery
The night Joseph was born I emailed the mom who organizes the homeschool events to see if she could connect me with other families with children who have Down syndrome. We needed to make decisions about Joseph’s surgery that was set for the next morning. She connected me with some really great families and women who have been incredibly supportive.
Joseph’s first day and the next- all the way up until we were about to roll him to surgery we were trying to decide what his surgery would entail. The duodenal atresia surgery was non-negotiable. This would open his stomach on the top and the bottom so that he would be able to eat eventually.
The choice that we were debating on was whether or not he would get a g-tube placed. The surgeon said that 80% of babies with Down syndrome who get this surgery end up needing the g-tube. So we could be safe and have it placed while he is already under anesthesia and the one round of antibiotics or we could start with an ng-tube hoping that he would take to the breast or bottle soon. If not, we would need a separate surgery to place the g-tube.
While “sleeping” at the hospital that night I contacted every contact that I received to see if anyone had dealt with this choice. I read as much as I could about it. I called Joseph’s pediatrician for advice and every medical person we know. There are risks and benefits with both the g-tube and ng-tube.
We weren’t *positive* at this point that he had Down syndrome. The doctors kept saying it was suspected, but I could tell in their voices that they knew and my husband couldn’t tell by the pictures I was sending to him. But I knew.
We decided to have the g-tube placed with the promise from the surgeon that if he didn’t need it we would be able to have it removed in 6 weeks or 6 weeks after he used it last.
If you are looking for somewhere to donate to during this #downsyndromeawarenessmonth consider Sean’s Path. While in the world, Sean was on a path of hope, faith, light, and joy. He exuded these qualities and inspired others wherever he went. The aim of Sean’s Path is to continue to bring his light to the world and move us all along a path that is closer to our families, closer to each other, closer to the core of what life is about, and closer to God.
Funds will support initiatives, causes, and organizations that fueled his unique path while on earth and can illuminate his path moving forward in 3 core areas: Faith, breaking boundaries and adventure.
An incredible blessing, they have provided us with support in many ways including a scholarship for The Doman Method classes to learn ways to help Joseph progress.
Before surgery they looked at Joseph’s heart (looked great), we had a snuggle and then he was off to pre-op. Signing papers to have your baby go through a serious surgery is nauseating.
I was confident that God was in control and that we were in good hands, but it is deeply frightening knowing that your baby will be in a room without you, so vulnerable.
All I could do was pray and wait. I didn’t eat it, but the polish food in the cafeteria was a comfort to see as Joseph’s Godparents are Polish 🙂
There were so many people praying for Joseph and praying over the surgical staff. We felt a great sense of peace that he would be ok.
The surgery went well, his stomach was now open on each end and a g-tube was placed.
My mom had to go home and I had to get my car, so I left the hospital that night to shower, see the older kids and go back in the morning.
Going home without your baby is another one of those out of body experiences, especially with little ones at home. Having to trust a hospital staff to properly care for my baby while I was over an hour away at home most nights for those 5 weeks was a transformative experience.
If it wasn’t for my faith in God I would never have been able to leave him. I kept thinking of ways to stay with him the whole time and protect him. With my husband being post-op and not having steady help to watch over him, I left it to God and his guardian angel and cried my way home each night. I called the nicu every night to speak to the night nurse and each morning before I left home to make sure he had a good night.
The nurses were wonderful. They sent pictures throughout the night and even had him listening to Vivaldi as I requested.
The next few days things were looking so good and we were so grateful. Joseph was still on IV nutrition, but I was pumping every 2-3hr to keep my supply up in the hopes that he would eventually breastfeed.
Praying to Our Lady of La Leche
On Joseph’s first day, not being able to feed him was incredibly hard. Knowing he was being pumped with sugar water in his first week or so was sickening. (Also appreciated that it was keeping him alive…)
I had been in contact with a lactation consultant before he was due because babies with Down syndrome can have a hard time with nursing even when not dealing with the duodenal atresia. He was born before we got to meet, but she stayed with me through text.
I started pumping a few hours after he was born and continued every 2-3 hours daily. Before the first pumping session I prayed this prayer:
O Lord Jesus Christ, through the intercession of Your gentle Mother, Our Lady of the Milk, who carried you close to her heart during the long months before your birth, I entrust myself into your hands. I implore you deliver me from useless and consuming worries. Accept the sacrifice of my ills and pains, which I join with your sufferings on the cross. Above all, merciful and loving Jesus, protect from all evil this child which you have given me, bestowing upon him the health and vigor that every child needs. Place in my heart and on my lips the prayers of your Mother and mine, our beautiful Lady of the Milk. All of this I ask with the intention that my child and myself can live to adore eternally Your Holy Name. Amen.
You can see in the pictures how that worked out for us. Soon enough I was stretching those feedings to every 4 hours and still had SO much milk.
The picture with the pacifier here is when he first got to taste milk. It was the happiest moment of my life. We had to go VERY slowly. He started with g-tube feedings because he wasn’t strong enough to nurse, had a little through bottle and eventually transitioned from TPN (IV nutrition) to full breast milk with g-tube/bottle.
Pumping is a commitment in the NICU, eventually I got comfortable doing it bedside so I wouldn’t be away from him so much. I had to bring my food every day because nutrition is so important for breastfeeding and hospital food is inedible (a project I would love to get involved with some day soon).
I stopped pumping when he started nursing full time in the spring, but had built up quite a stash. I eventually had to throw all of that milk away because I have high lipase milk. It was not as painful as when I had to do it 14 years earlier with my oldest despite the fact that it was 2 giant garbage bags full!
Leading up to heart surgery
As Joseph started having more feedings, he started to experience reflux and needed to be put back on oxygen. This was to be expected, but not ideal. He was not gaining weight as much as they wanted him to. Soon after he was presenting with a heart murmur which the dr.s on rounds debated each day whether or not it was getting louder.
When he was just over 2 weeks old they did an echocardiogram and found an enlarged hole in his heart (pda) and possible narrowing of the aorta (dr drew pic below to explain). We were praying so hard that the hole would close and that there was no coarctation. (Heart issues are very common in Down syndrome.)
He had 3 repeat echos and the PDA continued to get bigger. He also had a blood clot in his chest from taking out the picc line for the TPN so it was getting a little complicated.
He had to have surgery to place a device to close the hole in his heart and check for the narrowing of the aorta. This would have been a much bigger issue and would lead us to going to a different hospital for that larger surgery.
The surgery went extra long, but went well. They went in with a device on one side and a camera on the other. The device they chose was too small, so they had to take it out and get a bigger one and go back in. The narrowing they thought they saw was not there, so they placed the device and we didn’t have to have anything else done with his heart.
After the surgery they brought him back to the NICU under what looks like rotisserie lights. I don’t want to go into details, but I asked them to take his temperature after they assured me he was not too hot and he was 102.7 (insert eye roll)- Just a warning to moms to trust your instincts when medical people tell you that you are wrong.
The team of surgeons came up with the x-ray machine and all looked very nervous. Because they had to go in twice, the risk of problems occurring was doubled. Thank God, the device that they placed did not move and Joseph was able to start recovering from this surgery now.
Trials/Suffering bringing our children closer to God
When I gave birth to my first son 15 years ago I had the strongest/most surprising feeling that this was not my child, rather God’s child that I was chosen to care for in this life. This was before I had really come back to the church in my heart, so it caught me off guard.
It was the most certain I have ever felt about something, yet if you told me I was going to feel that when I was pregnant I would have said no way, this is MY baby!
This thought has always helped me in my parenting. When I struggle with something I come back to that thought and it usually helps me make the right decision easily. We are not only stewarding our children, we also have to be faithful as these are His children.
As a parent you want to shield your children from obstacles/suffering, but that is what brings them closer to God and develops their character.
Coming to terms with your tiny baby suffering is a little different as we can’t understand their suffering. Joseph was so inspiring through everything. His presence was/is the most peaceful, sweet thing you can imagine. He exudes joy, calm and love.
Through his trials he inspired people who are uncomfortable ever speaking about God to offer prayers.
The possible health trials that come with a Down syndrome diagnosis are so small in comparison to the life that Joseph gets to live.
Negotiating with God
So many times during pregnancy I negotiated with God. If this baby did not have Down syndrome I was going to make sure he was a priest. If this baby didn’t have Down syndrome I would XY and Z…
When we were pretty sure he had it (9/10 and a stomach problem) I told God it was fine with me if he has Down syndrome. As long as he is healthy and doesn’t have all of those health problems that I read about that are associated with Down syndrome, then I would be fine.
How little I knew.
Joseph had varying degrees of everything I was afraid of. From the moment my water broke, throughout the NICU I felt like I was getting crashed down by waves and by the time I stood up another wave came and wiped me out. Still on weeks with lots of dr appts and getting back to life with everything else it feels like that from time to time.
No matter how close you are to God and how much you trust Him… “Your will be done” is the easiest and hardest prayer there is.
My friend at Sean’s Path gave me the Surrender Novena when we got home from the hospital and it was the best thing for me at the time (and all the time!). Total abandonment to God is way harder than it sounds, but when you catch glimpses of it in your efforts you will feel such peace.
I stopped negotiating with God.
I have a surrender key chain from Just Love Prints which is an incredible reminder. I bought a bunch of gifts from her shop and stick them in thank you cards and other gifts. Great local small business!
Preparation, not fear.
If I was telling someone who is pregnant how to prepare for your baby with Down syndrome… Celebrate your baby, do not fear and ask questions so you can be prepared.
When you are given an apology before a congratulations, remember that God doesn’t make mistakes.
A few of our midwives apologized about Joseph. One without ever saying a positive word. (I had to ask her to leave while I was in labor.)
The genetic counselor offered termination at 20 weeks and begrudgingly gave us a book with a hopeful outlook about Down syndrome at 33 weeks.
When we went to the 33 wk mfm appt. and the dr said there was something wrong with his stomach, we should have pushed for what that meant for him/us. Had we been able to research more about duodenal atresia we could have made better decisions about what to do when I went into labor.
In our situation, we would have known that gave him a higher risk for being premature. We wouldn’t have booked my husband’s surgery for that time. The midwife suggested induction which made us think we may go late.
I would also tell them to not be afraid at all. I have heard from so many in the DS community that the joy their baby brought to their lives is immeasurable. People who have Down syndrome tend to be incredibly innocent and so happy. They are all unique like the rest of us. God makes no mistakes.
When my then-14 year old processed that his baby brother would most likely have Down syndrome he came to me and said that he read that people with Down syndrome are very happy and he thinks that our new baby would make us very happy. He was so right. 🙂 <3
It may have taken Joseph a little longer to come home, to give us those purposeful smiles and sweet little bell laughs, but that makes them all that much more exciting.
Meeting with genetic counselor pregnant vs. after birth
When Joseph was 13 days old we got the bloodwork back confirming that he has trisomy 21. The NICU sets you up with a genetic counselor to speak to when that happens. I am not sure what their job description is. She told us about a book to buy, Birth23 and printed a picture of DNA, pointing to the 21st set of chromosomes, which has 3.
This was anticlimactic, but a much better experience than the genetic counselor that we were sent to after our ultrasound.
In the very same office where you watch your baby moving around and watch their little heart beat, they offer you a speedy trip to fetal cardiac specialist to confirm so you can “terminate the pregnancy”. These are very nice words for killing your baby.
Any woman over the age of 35 who is told that theirs is a geriatric pregnancy is probably used to being treated this way.
I would love to help get this to stop.
I think it is because of the way society has devalued any life not seen as perfect. Because I live in CT where your “right” to abortion is “protected” until 24 weeks, my mfm (which is in NY, but same time frame) they rush you to further testing so that you can have your baby “taken care of” in time. Sounds more mafia than medical, but…
As a Christian, of course I am pro-life, but this experience is eye opening. Why is it that the most vulnerable people have targets on their backs.
In the US, 67% of babies with Down syndrome are killed in abortions. Perhaps that number would not be so astronomical if the drs and midwives offered congratulations instead of offering to “take care of it”.
How a genetic condition makes medical people turn from congratulations to offers to kill should stop anyone in their tracks. It’s the same baby that we watched on the screen with glee minutes ago and in the blink of an eye he is dehumanized to “it”.
The last couple of weeks in the NICU with Joseph were more of a roller coaster. He was recovering from the heart surgery. This meant weaning off of oxygen again and focusing on gaining weight. There were lots of ups and downs.
The g-tube would run most of his feeds over 2 hours every three hours, eventually getting down to 1 hour. The decreasing of the time would cause more reflux which would cause more oxygen problems. It felt like he was always connected to his feeding tube and I did not want to bring him home on it.
I was separating out my fore milk and hind milk when pumping to make him gain weight faster. They were not satisfied with that so they made me (story for another time) fortify my breast milk with formula. This was incredibly painful to me as there is NO good baby formula available on the market.
We were also trying to get him to stop using the g-tube and take bottles/breast.
Breast was essentially not happening at all. Bottles were eh. We were getting 5ml-35ml when he needed 55ml per feed every three hours.
Well, despite failing 2 or 3 car seat tests, they wanted him out of the NICU. We wanted him home, so he came home in a car bed, being fed mostly by g-tube. (g-tube is a little button that is surgically placed in the belly that the milk goes directly into, bypassing the mouth when children have trouble eating.)
We spent the last week preparing me to feed him by g-tube, making sure I could trouble shoot the pump and had all of the equipment needed for this… The pump, the bags, tubes, syringes for vitamins, split gauze, IV pole, travel versions/bags, g-tube care supplies, backup g-tube in case of emergency…
The last day they thought he may not come home because he failed multiple hearing tests and technically the car bed test, but the attending that day said he shouldn’t have taken a car bed test, just take him home!
Finally, after 5 weeks, days before he was due to be born, our angel came home.
The last year with Joseph has been an incredible journey. When you are told that you should be grateful for all God’s gifts, including suffering, it is hard to understand. This year has been hard, amazing, heart-wrenching and just the best ever. The life you plan is not going to be nearly as good as the life He has planned for you. I am so honored that God chose me to take care of His 4 incredible children. Down syndrome diagnosis seems so hard, yet none of us know how long we have a Joseph exudes joy and peace. I am thrilled that I get to be his mom.
A few things that I have learned in this short time… things that people have said about my son that felt good:
Congratulations! and Is he ok, health-wise?
Things that people have said that should have been rethought:
I’m so sorry. (In 100 variations.)
You will outlive your son.
That last one was a doozy…
Be the person that says congratulations when someone tells you their child has Down syndrome (or whatever it may be).
Advice for NICU moms..
You are THE advocate. Don’t leave if you don’t have to. Know what you want beforehand because it is hard to make decisions when you are that tired. Don’t be afraid to ask for support. Bring all of your food from home. There is nothing in hospital kitchens that will support your health and you will need all the good energy you can get. I lived on greek yogurt with wild blueberries, homemade bone broth, hard boiled eggs, clementines, assorted tree nuts, bananas, grass fed beef sticks and the occasional nut butter sandwich.
Accept the meal train offers if you can. We were not able because of our older kids’ allergies, so we were blessed with gift cards sent for restaurants, groceries, (gas would have been a great idea as I was driving almost 3 hours/day), house cleaning, child watching… Every single kindness was so deeply appreciated.
Businesses/ Resources by/for People with Down’s Syndrome
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