Riley at 5 months
Hi Everyone! We are newcomers to the world of Wolf-Hirschhorn. My son Riley just turned 5 months old yesterday! Every day is a new day with our bright little baby.
To just give some background. My husband and I are first time parents and did not know until he was 7 weeks old that our diagnosis was Wolf-Hirschhorn. He was born four weeks early at a whooping 3lbs 12oz and 16-1/2ins long. While we knew he was going to be small, nothing prepares you for such a tiny little baby. We spent the next 44 days in the NICU with a hospital transfer to a higher level NICU. It was the hardest 44 days of my life. During that time we didn’t really know what was exactly wrong with our beautiful baby boy. We knew his kidneys were ½ the size they should have been but at the first hospital we were told they were fully functioning. He needed an NG tube for feeds.( his tiny mouth would never have been able to latch) We were blessed that he never required oxygen or breathing assistance and that his heart was strong. He proved to be the sweetest baby even through all the poking and prodding they had to do to test for his kidney labs( daily) I thought I would never be able to touch his feet without him wincing. After we found out that his kidneys don’t filter potassium properly they started us on a medicine that works really effectively at keeping us in safe ranges and we thought we were on the fast track to home. This medicine in conjunction to trying our best to transition him out of the feeding tube led to some lazy bowel syndrome and at that point we needed to be transferred across the street to a hospital with a high level NICU.
It was at this hospital that we were informed that on top of being small his kidneys that only functioned at about 20%( about 20% lower than they should have been) We were prepared for kidney transplant before he turned 3. Also during the lazy bowel syndrome was happening some amazing occurred. My son who was never interested in taking a bottle decided after a day of no food he didn’t need the tube and anymore and started taking the bottle for every feeding. We never looked back. He started eating the best he could. We dealt with a lot of spitting up, they told us to expect a super sensitive gag reflex due to the feeding tube being in for almost a month. We since have found out that he has some mild reflux. Due to his kidney issue we can’t give him any normal amounts of protein to help him with weight gain, so he continued to put on about ½ the weight a normal baby would for two weeks and with our kidneys numbers under control they finally set us free!!!
Since we got home he has slowly been gaining weight but has surpassed the expectations of weight gain so far. At 5 months he weighed in at 8lbs 10.6 oz and is 21 ½ ins long with a head circumference of 14 ¾ ins. We of course would love to see him gaining more weight he is gaining consistently about 10grams a day and has grown 5 inches since birth!!!! That’s crazy to me. Feedings have been our biggest struggle. He just didn’t have much interested in eating and had such a hard time taking in the volume he needed. He eats every three hours and it was taking us 45-50 minutes to get him to take the adequate volume for weight gain that it wasn’t leaving much time for anything else in our lives. I literally felt like I was going crazy most days. On February 10th we got his tongue and lip unlatched at the referral of our feeding therapist. It has made such a huge difference in our baby. He actually acts hungry now and while he eats he was way more productive. Our dietician suggested adding extra fat into his diet since we can’t do much else because of his kidneys. We have started giving him ¼ tsp of canola oil with each feeding but mixing oil and milk= not a lot of fun. We just got to start rice cereal last night and he didn’t hate it so only time will tell if he will transition to solid foods well.
He was a very quiet baby until about maybe Christmas time and then started to find his voice here and there. When started back at work at the end of January my mother in law started babysitting him. He apparently LOVES his Grandma because he magically started becoming way more chatty while with her. She has been a godsend to him. I know in my heart her being with him has helped his communication( even in the short month it’s been) After we got his tongue and lip unlatched he has become even more chatty. It’s such a huge difference.
He has been hitting develop milestones pretty well on schedule for his adjusted age so far. He just this week figured out he has the muscle mass to roll over but doesn’t quite have the whole tucking his shoulder or stretching his arm out forward enough to roll every time on his own. He still isn’t very into putting things in his mouth (other than his hands) quite yet though. I’m sure it will come with time but I still have a bad habit of focusing on the things we aren’t doing yet and worrying about them.
Since Riley was born we have seen so many specialists its crazy. From our nephrologists, urologist( he has mild hypospadia), dentist geneticist to just yesterday we had a consultation with neurology. It’s been so many doctors it’s a whirlwind. His deletion was categorized as being large and we have a translocation to his 10th chromosome also. Both my husband and I have been tested because of the translocation issue. My tests came back normal and we are still waiting to hear back about my husbands. I pray that they come back normal and we can naturally plan for some siblings for Riley.
SO that’s our story so far. Most days I am hopeful and excited about the future and others I am so worried and anxiety ridden I don’t know how I made it through 24 hrs of this life. It’s nice to be connected to all of these families with such similar issues. I look forward to reading more about everyone else’s situation and beautiful families.
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Heather and family,
Congratulations on your new baby boy and getting through these first five months. Welcome to this club that nobody really expects to be a part of. You are doing a fantastic job as a mama bear to your son. This is your first child and God sure has you hitting the floor sprinting.
He will show you love in ways you never thought possible. Since I’m pretty new to this group and still a “rookie,” I am still trying to find the balance needed to make a happy life for all involved. I think the goal is just to never give up in achieving that balance and remember that you need to take care of yourself too. Easier said than done, of course. Remember…on an airplane, they say to put your mask on first before your child’s. You won’t be able to take care of anyone if your needs also don’t get met.
I know Riley will do amazing things. I also know that we will meet someday (hopefully soon) since you live close! Please let me know if you need anything at all.
God bless you, Riley, and your whole family.
Sincerely,
Keely
Riley is much, much too cute. Thank you so much for sharing his story. I am so happy for his growth and that his development is really coming along. That is truly wonderful. Many elements of your story feel very familiar to me, as you work to get a baseline on where you are, across all medical and developmental areas. I love that you’ve clued into the social elements, too. My Elsa has a really special bond with my sister. They are like little soul mates. I am so grateful when they get to spend time together. Elsa (age 4) was our first born and we now have two other typically developing daughters (ages 2.5 and 1). We had a bit of a scare with daughter #3, that there was going to be a chromosome issue, but all ended up being fine. It was a good heart-check for me though. I thought I had already been delivered my one child with special needs, and that it couldn’t possibly happen twice. It turned out not to be the case, but it sure set me straight. I feel so blessed to live in this country (US), and at this point in time, when we can access so many amazing supports. I cannot imagine how Elsa would be doing if we lived in the midst of even more challenging circumstances. Please continue to share about Riley and how he is coming along. Great things are in store!!
Congratulations on the birth of your charming baby boy, prince Riley. He has such a sweet smile, it is hard to believe all the things he’s gone through in the short 5 months of his life.
I am sorry to hear about his kidney problems, and the prospects of a possible transplant. I don’t understand if his kidneys are functioning at 20% capacity or 80% (20% below normal). Could you tell me the name of the medicine he takes to keep his potassium at a safe level? I heard there was a medication that did this. I’d like to read about it. My daughter, Rochelle, was born with one kidney, and it functions at 20% capacity now. Her situation is not the same as Riley’s though because she is 36 years old now. I hope that you meant to say Riley’s kidneys function at 80% (20% below capacity), and that you do need to deal with dialysis and transplant while he’s still a baby.
Despite their medical problems, babies, children, and adults with WHS are delightful. It sounds like both you and Riley’s grandmother have discovered this. You seem to have an honest, realistic, and most importantly an optimistic approach to parenting. I’m looking forward to reading more about Riley soon.
I just want to welcome you to the WHS family! You’ll see that your little one may always be little in size but a giant in heart. Always remember that God would NEVER give us anything we cannot handle. You and your family have been granted this great gift….times will be tough and then they won’t be. But you’ll find that the journey is well worth it in the end. Can’t wait to read more about Riley.
Hi,
The medicine he takes for his kidneys is kayexalate. We had it explained to us that at birth your kidneys are only functioning at about 40% of their normal capacity. At birth Riley’s were only functioning at 20% so about half of what they would expect a normal babies to function at.