To the parents that just found out their baby will have Down Syndrome. I wanted to tell you your baby is worth celebrating! Here is why: 1. You might be scared that your life will be different because your child won't be "normal". That is not true. Your child is not any less "normal" than a "typical" baby. Your baby will still eat, poop/pee/spit up on you, cry, laugh, play and do everything else that a "typical" baby does. They will reach every milestone, but it will be an "extra" special celebration because they worked so hard to master it. That is worth celebrating! 2. You may be scared that your child will be unhealthy. You may have heard this from your doctor, the news, or social media. However, your baby can be healthy. Just because they are EXTRA special doesn't mean they will have some of the medical complexities that sometimes come with Down Syndrome, that have made the world view Down Syndrome as "unhealthy". Guess what? Lots of babies with Down Syndrome are born without medical complexities, just like"typical" babies, and lots of "typical" babies are born with medical complexities, just like those with Down Syndrome. There is no difference just because of that extra specialness your baby has. That is worth celebrating! 3. You might be mourning right now for the child you thought you would have. These are valid feelings that you need to have. Take your time and work through them. However, I want to tell you that a year from now, you will look back on this moment and you will tell yourself how silly you were. You will realize how lucky you are. It's hard to see it now, but I promise it's the truth. That is worth celebrating! 4. You may feel very alone right now. You are not alone! There is an amazing community right here waiting with open arms to welcome you, support you and love on you! You have just gained access to the most supportive and uplifting family who knows exactly how you feel! That is worth celebrating! 5. Last, but not least, CONGRATUFREAKINLATIONS, you are having a baby...who just happens to have Down Syndrome! And THAT is worth CELEBRATING! (If you are a new mom to a baby with Down syndrome and would like to see what your life might be like. I document ours on Instagram - @thegaddisgazette - we are just like a normal family with a little extra love)
After my grieving period was over I was finally able to start being excited again and start preparing for Blake's arrival.
I jumped right in and started researching as much as I could so I could be as prepared as I could. Now that he is here I feel like I could have been even more prepared had I known some things. If you are preparing for the arrival of your little one with Down Syndrome I hope you find this helpful.
1. Have as much family time as you can, because when that little bundle of joy arrives you will be so busy!
2. Get involved in your local Down syndrome community. Go meet other families and talk to people who have Down syndrome. Specifically someone who is a teenager or adult. I really wish we had done this.
3. Watch the show "Born This Way" on A&E. I didn't even know about this show until after Blake was born, but it would have helped me with the processing so much if I had been able to watch it while pregnant.
4. Find out what your options are for Physical Therapy, Occupational Therapy and Speech Therapy. Reach out to your state Early Intervention Program and get that process started because it can take a while. Find out what your insurance covers. I believe it is so important to start therapies as soon as possible even if your baby is meeting milestones because a therapist can tell as soon as they start to get delayed and can show what you can do to help you child meet the milestones that they are missing.
5. Tour the NICU that your baby would go to if needed. Even if there are no medical issues that you are aware of, tour anyways, because you never know what could happen. This isn't to scare you, but a lot of babies go to the NICU for respiratory help, low blood sugar and feeding problems. Some don't go at all, but it is better to be prepared. Some babies are premature which would require a NICU stay.
6. Join the Down Syndrome Diagnosis Network Facebook groups (DSDN). These women (they also have dad group) are amazing. You will need a ton of support on this journey and having women by your side going through the same thing at the same time is invaluable. Also being a part of the main group and being able to ask advice from women who have already been in your shoes is amazing.
7. If you are wanting to breastfeed, find an IBCLC now that is familiar with low tone babies. This will be invaluable. Also find a private speech therapist that is familiar with breastfeeding. See both of these people as soon as possible after baby's birth. If you are in the NICU and baby is able to have oral feeds I high suggest having them come there if possible. There is a DSDN group for pumping and breastfeeding as well. I am convinced that had I done this, our breastfeeding journey would have been very different.
8. If you are into reading books for research these are good options.
9. If you are mostly into researching via the internet I have some good ones listed here.
10. Have people set up and ready to help you once baby comes. Especially if you are expecting a NICU stay. Even if you think you won't need help because you've done the baby thing before. It is so different adding child with Down syndrome, even with no medical issues they come with a lot of extra doctor appointments.
10. Read the book Bloom, it is amazing and will validate everything your are feeling.
11. Find a car seat with a lot of support for the lower tone. Something with head wings. We actually just replaced Blake's seat because I was over having to add extra support.
12. Get maternity pictures done because even though you may not feel like celebrating you will regret it if you don't.
Lastly, enjoy your pregnancy because before you know it you will be missing those little kicks. At least I did.
In early August 2017 two pink lines showed up on the test, or in our case one blue line. I was so excited and couldn't wait to have Emma tell her dad that we were expecting another baby.
The first trimester was pretty uneventful, just the normal morning sickness and overall exhaustion that pregnancy brings, on top of being a mom of a toddler and working full time. We declined the genetic blood test as we knew the results wouldn't change our mind about keeping the pregnancy and we didn't want to find out the gender.
On December 15th we went to see a specialist for our 19 week anatomy scan as I had had pre-eclampsia with Emma and my midwives just wanted me checked over by a specialist and released before they took over for the rest of the pregnancy. Bobby and I went into that appointment just happy to finally get to look at the baby on the ultrasound. Little did we know that our world was about to be turned upside down.
When the doctor came in to discuss the results she said that he had a calcification on his heart and that his kidneys had a little extra fluid on them. She said that these can be soft markers for Down syndrome. That is basically all she said and offered the blood screening. We were shocked as we thought Down syndrome was hereditary. We also knew nothing about it and were provided no information about it. We left distraught. I was in shock. I cried for days. I Googled for days. Even though everything I found said that the baby would be happy and able to do everything a typical child could do, it would just take longer, I still felt so sad.
I knew I would love the baby, I knew that the baby would be fine and that we would do everything in our power to help the baby be successful. I was in utter despair it felt like, because I was grieving the child that I thought I had lost. The the playing with Emma and their talks as adults. The protecting each other and playing make believe together. Now all I could think about was how we would probably never be childless, how when we were gone Emma would be left to take care of her sibling with a disability. I knew people said that a person with Down syndrome could be independent and take care of themselves, but I still knew that we would always have to be very involved in the baby's life. I hoped that Emma never felt like her sibling was a burden.
As the weeks went on the grief got better. I would look at the sonogram pictures and just stare at all the tiny parts. I would try to keep reminding myself that while life would be different our baby would still be wonderful. I burst randomly into tears over the next few months. I would feel sad and angry a lot. I snuggled Emma a lot more over that month. Christmas was a few weeks after our blood screening came back with a 93% chance. I tried my best to let that be a distraction. I would still wake up in the middle of the night and just burst into tears. I was a mess for several months.
I poured into all the resources that I found. Especially my Facebook group through Down Syndrome Diagnosis Network. These women who had already been there, or were going through the same thing as me were my rocks.
I felt so guilty for being sad about the baby's diagnosis. Every time I felt grief I would then feel guilt over feeling the grief. If I could go back and give myself advice, it would be to feel any emotion that I wanted for as long or as hard as I wanted. I had to grieve so I could move on and start to be excited again. Grief is an important part of the process. I wish I could also tell myself that it would be okay, all the stress and grief would be worth it and that Blake would be the sweetest little boy we had every met.
This is about Blake's first four weeks of life which was from May 1st to 29th.
About 20 minutes after he was born he was taken across the sky bridge to the children's hospital. Bobby went with him. They ran some tests and he got his cardiac echo. The echo showed the VSD and the Coarct of the Aorta, but they decided to wait and see how his aorta did over the next few days.
While I was waiting to go see Blake I got a picture and video from Emma.
Bobby sent me this picture from the NICU. Blake's cheeks were so swollen from delivery, they are no longer that chubby. Bobby also asked me if I wanted him to have breastmilk or formula. Why he asked me this I have no idea because he knows how hard core I am about breastfeeding.
I was able to go over and see him a couple of hours later.
We tried nursing some and he got colostrum that I was able to express out of a bottle
Emma went to stay with her Aunt Melody and Uncle Michael and play with her cousin CJ. She had a blast.
Blake had to go on oxygen over night on the 1st because he couldn't stay above the 80s.
On the 2nd we had to switch to only bottles so we knew how much he was getting because his blood sugar was low. His jaundice level also went to a 10.1 so he had to go under the light therapy.
Emma continued to have fun at her aunt and uncle's house.
On the 3rd, Blake was able to nurse a little bit and drank 1 oz from a bottle. My milk came in this day which was really fast. With Emma took a full 5 days and at this point Blake wasn't even 48 hours old yet. He passed his hearing test and got to have his first bath, which is the swaddle bath in the picture below.
Speech came in to evaluate his suck, he was gagging a little bit but the therapist thought that was just due to being sleepy because of the jaundice so he wasn't coordinated enough for the suck, swallow, breath. We tried to nurse again at 6 and he finally got a good latch and nursed for about 20 minutes.
Emma was still having a lot of fun. Apparently Michael got her chicken nuggets and apples for lunch one day and she said "uh, no french fries?"
Some PJ Masks before bedtime.
Sweet cousins.
Blake still had some low glucose issues over night on the 4th, but he was able to come off of light therapy around noon which allowed us to do a lot of skin to skin.
He was able to come off oxygen as well.
We tried nursing some again, but he gets really frustrated because he can't stay latched and it is burning too much of his energy so we are backing off of that for a little while.
Occupational therapy came in to evaluate his low muscle tone. She said it is on the mild side, which means his tone is close to that of a typical baby.
He lost a gram, but is still above birth weight.
Are these hiccups not the cutest thing ever?
May 5th he was back at birth weight, he didn't eat too well over night and had to go back on a little bit of oxygen .1 liters. He did well on his 9am feeding eating his oz (30mls) in less than 10 min. His jaundice level had gone back up, but not enough to need light therapy again. At noon he ate 1 oz (30mls) in 15 min. Then we did 1.5 hours of skin to skin. At his 3 o'clock feeding he only ate 20mls, but then at his 6pm feeding he at the full 30mls. At this point I was exhausted having to get up every three hours at night to pump that I dropped a night pump and it has been so much better and I am finally feeling somewhat rested.
May 6th he did better eating and we were able to do more skin to skin. They upped the amount they wanted him to take to 35 to 40 mls. They had to put a feeding tube in at this point because he was getting dehydrated from not being able to take enough.
May 7th he did well at about 50% of the feedings but did finally lose some weight and got below birth weight. We tried to nurse and while he didn't transfer anything he was able to latch with the help of a shield. They upped his feeding about to 45mls. PT came by to evaluate him, she said his tone is actually really good for a baby with Down Syndrome and is on the high side of low. He is still really tired and doesn't have a lot of stamina.
May 8th, he was one week old today. He didn't do well last not on his feedings. He had some fast breathing episodes, but they are still trying to wean off of oxygen. We tried nursing and tube feeding at the same time so he would associate nursing with food. We found out he has an ASD that is 2.5mm.
May 9th, he has an alert window and if you miss it he will not eat we have learned which is part of why he is having so much trouble with eating. We found out that he actually doesn't have an ASD, but a PFO which everyone has and it is not an issue. The NICU did a lot of stuff for Mother's day this week and one of the things they did was have Kendra Scott come in and I got to pick out a free piece of jewelry. I picked green since it is Blake's birth stone.
May 10th, We tried a different bottle the Medela with a slow flow nipple he did better, but after a few times we decided it was too fast of a flow and we were scared he may start aspirating.
May 11th, in the past 24 hours he took 53% orally compared to 20% the previous 24 hours. OT came in and worked on him looking left, bicycle legs, and opposite hand to foot. His Gami came to see him. He was still getting really sleepy and tired while eating.
May 12th, he started taking about 1/3 to 1/2 of each bottle. He always eats better for Bobby than for anyone else. He was still sleeping through 1 to 2 feeds a day.
May 13th, He weighed 6lb 11 oz, up from his birth weight of 6lb 7oz. Still not a lot of change on the feeding front.
May 14th, He was now able to regulate his own temperature better so they moved him from the incubator to the open crib. He took about 1/3 of his bottles over night. He was a little restless this day and even skin to skin wasn't calming him down like it normally did. We tried to nurse at noon and he did well. When I got home that evening we had his newborn screening results that said he needed further testing because he could possible have Severe Combined Immunodeficiency orSCID. It basically means he has no immune system at all. That was a scary night for me at home without him as we couldn't talk to the doctor until the next day.
May 15th, We tried nursing again. He had PT which always makes him really tired. They had an Infectious Disease doctor come look at him because of the SCID result. He wasn't worried at all, but they took some blood to check everything out. His umbilical cord fell off today.
May 16th, He did decent with bottles over night. Speech came in and we made some adjustments to feeding positions. We did our daily skin to skin and OT came it to work with him. She agreed that his muscle tone is pretty good and was impressed with the amount he could lift his head. We got his karotype test back which tells us which type of Down Syndrome he has. He has the most common, nondisjunction (the others are translocation which is hereditary and mosaic which is really rare).
May 17th/18th, these days were uneventful no changes, no progress.
May 19th, He attempted all his bottles at night and met his Aunt Melody and Uncle Michael.
May 20th, did well eating and had a lot of awake time.
May 21st, he weighed 6lb 15oz. They ran the blood test of SCID and it will take a few days to get results. We started to try to wean off of oxygen. He made it 11.5 hours before they had to put it back on. We tried nursing but he didn't do very well. They started him on iron and found out he had low platelets, which is what clots your blood, so we have to put his circumcision on hold. He got his Hep B shot.
May 22nd, We were able to enroll with Early Childhood Intervention (ECI), so that we can start immediately when we are discharged. We tried to wean off oxygen again, but he only made it 9 hours this time. I went to a G-button/tube class because they doctors were starting to give that as an option and I was leaning toward it because I knew it would mean we could go home. After going to class I knew that was not the option for us and we just needed to give him some more time.
May 23rd, He had OT and we got the SCID results, they were not 100% conclusive because he had low B cells. We will go for more labs and follow ups in July. We switched the Dr. Brown bottle to see if he could take that one better. I felt like the Playtex one we were using was just too slow and he was having to work to hard which is why he was falling asleep.
May 24th, nothing exciting happened.
May 25th, they moved us out of the cardio unit and into the general NICU. He took 66% of his feed orally.
May 26th, his Great Papa and Nana came to meet him
May 27th, this weekend was hard because it was Memorial weekend. This was the first day I had not gone to the NICU to see him. Bobby went instead and I stayed with Emma. They tried weaning him off of oxygen again.
May 28th, Bobby stayed with Emma and I went up to the hospital for the first half of the day. He has been off of oxygen for 24 hours and still going. I started getting really frustrate at this point. Our normal neonatologist was on vacation for the week and we had random doctors left and right telling us different things and wanting to do things. Because he was so tired he couldn't take enough volume to gain weight so they wanted to fortify the breastmilk with formula to add extra calories. However, they didn't tell me this was the reason, they told me it was because of his heart or because he could aspirate if they upped his amount which made no sense to us what-so-ever. Up until this point I had a great milk supply, but my supply tanked and it tanked hard. I was so upset that they had to fortify as I am such believer in breast milk. When our doctor returned and explained that it was a volume issue due to his low endurance, I felt a lot better and my supply went right back up. I don't understand why they were telling us all the other stuff.
May 29th, he was officially considered to be off oxygen at this point. The night of the 28th he pulled his feeding tube out and they didn't have to replace it as he took all of his bottles over night.
May 30th, they still hadn't had to replace his feeding tube so he went to an on demand feeding schedule with a daily intake goal. The talks of going home started! He had another echo before we were discharged and his VSD had closed!
May 31st, I roomed in to give all the care for the next 24 hours. He slept a total of 3 hours that whole night. It was exhausting but he met all his feeding goals and even upped is intake by 10 mls.
June 1st, Bobby took over that afternoon and roomed in that night so I could have one last night with Emma. Blake again did awesome and actually slept some for dad. They started him on Thyroid meds because he was diagnosed with Hypothyroidism which is probably one of the reasons he had so much trouble staying awake to eat.
June 2nd, we were discharged and got to go home after 33 days in the NICU! We left with no oxygen needs, no feeding tube of any kind and being cleared from cardio 100%.
