I have been on HB since 2011 when I was pregnant with my LO. I have "known" so many of you since then and watched our LOs grow up together. We have celebrated milestones; commiserated over tough phases; given and received advice; and shared so many memories, laughs, and parenting tips over the years.

I'm very fortunate that my family lives close by and that I have a tight-knit local mom group as well as long time friends that live close by. But there is just something so special about HB. Where else can I post a question in the middle of the night about my sick baby and have other moms respond in an instant - sure, I call my pediatrician's nurse line, but I'm not going to text my friends in the middle of the night just b/c I can't sleep and am worried. Where else can I post a ridiculous question that none of my IRL mom friends can answer and get several responses from moms who either went through or are going through the same thing.

As many of you know, I'm pregnant with my second LO (Ava Quinn) and dealing with a provisional diagnosis of Autosomal Recessive Polycystic Kidney Disease ("ARPKD") (see below for more information about ARPKD). We found out at 28 weeks and I'm currently 35 weeks. I've been absent from HB as my husband and I are doing the best we can to prepare ourselves for A's arrival. This not only includes numerous appointments with specialists and visits to Seattle Children's Hospital, but arrangements for DD1 who will need someone to care for her while we are at Children's Hospital with A for weeks/months.

Again, my husband and I are very fortunate to have both sets of parents in a position to share time caring for DD1 and we have a great local support system in place (which includes several local HB members) who have coordinated a meal drop off schedule to give us a break from the hospital cafeteria. But where else can a person be so lucky to have so many online friends ban together to raise over $1,000 to help us with all the medical bills we will be facing this year (and in years to come as A will most certainly need a kidney transplant); send their thoughts and prayers; send cards and gifts; and just check in on a regular basis to offer their love and support.

And where else can I read about another baby's experience in the NICU; what life is like caring for an infant with a chronic illness (dealing with medical supplies, alarms going off, etc), what I can expect caring for a baby with a feeding tube...and then have that mom reach out to me and call me to share her experiences and answer my questions (thank you Mrs. Tiger!)...and who so generously offers to send me feeding tube covers and to make a feeding tube backpack for my LO. Where else can I have numerous people reach out to offer their help and assistance? I have a HB mom who has been through dialysis and a kidney transplant herself (@petunia354) offering to be there for me. @seattlemom is a lactation nurse in the NICU and has sent me so much helpful information. And there are so many others who have reached out to me offering their help (referrals to pediatric nephrologists and urologists at Seattle Children's - thank you to all of you!).

I have done so much research and gone to other forums looking for guidance on what I can expect as an ARPKD mom...and THERE IS NO PLACE LIKE HELLOBEE.

I have 2 weeks left until I go in for my csection (November 13th is my csection date). The doctors have decided 37 weeks is the sweet spot - A is hopefully developed enough to breathe on her own (her kidneys are more than twice the size of what they should be and are crowding her lungs) and hopefully weighs enough to go through peritoneal dialysis (they have never done dialysis treatment in an infant under 4 lbs)...if she stays past 37 weeks the risks of cord compression and distress increase a lot because as of two weeks ago I have no measurable fluid.

I am so worried and so scared, but my husband and I are ready to do the best we can to fight and advocate for our baby. Your love and support have meant so much. I wish I had the time to thank you all personally. I will be checking in from time to time, but mostly will be absent as I get ready for A's arrival. I will be in touch with my local HB friends and December mamas (@sunny, @AlittleP, @HLK208, @banddmommy, @winniebee, etc) when A arrives and if I am unable to post an update, I'm sure they will keep you updated on how things are going.

I just wanted to thank all of you for making HB such a great community. I am lucky to have you all and we are so lucky to have each other. I love you all

https://www.counsyl.com/services/family-prep-screen/diseases/autosomal-recessive-polycystic-kidney-disease/

What is Autosomal Recessive Polycystic Kidney Disease?

Autosomal recessive polycystic kidney disease (ARPKD) is an inherited disease in which clusters of fluid-filled sacs (cysts) form in the kidneys, often leading to kidney failure by the age of 10 and a reduced lifespan. According to studies, between 23 and 30% of infants with ARPKD die hours or days after birth due to breathing difficulties.

The majority of infants with ARPKD show enlarged, cyst-filled kidneys within the first month of life. These cysts will impair the kidneys’ ability to filter waste from the body. About 50% of infants with the disease will also have an enlarged liver. These anomalies are often detectable through ultrasound before the child is born. More than half of children will develop kidney failure by the age of 10. Without dialysis or transplantation, the disease is often fatal.

A minority of people with ARPKD do not show symptoms of the disease until later in childhood or early in adulthood, with liver disease being the dominant symptom. In these people, the kidney disease is often mild.

Extremely high blood pressure is common in people with ARPKD. They are also prone to urinary tract infections, frequent urination, low blood cell counts, pain in the back or the sides, varicose veins, and hemorrhoids. Many are also smaller than normal in stature.

How Common is Autosomal Recessive Polycystic Kidney Disease?

ARPKD affects 1 in every 15,000 to 40,000 infants. However, the disease may actually be more common since people with milder forms of the disease may not be diagnosed without genetic testing. About 1 in 70 U.S. adults is thought to be a carrier of ARPKD.

How is Autosomal Recessive Polycystic Kidney Disease Treated?

The initial concern with infants who have ARPKD is to protect their ability to breathe. Eating a nutritious diet can help the child’s growth, and in some cases, growth hormones are recommended. Infants and children may require feeding tubes in order to ensure proper growth.

If faced with kidney failure, people with ARPKD frequently undergo dialysis (a “cleansing” of the blood through a machine that remove wastes) or kidney transplants. If the liver is extremely damaged, transplantation of this organ may also be recommended. Some people with ARPKD must undergo dialysis or a kidney transplant while they are still in infancy.

In all people with ARPKD, medications can lower blood pressure and clear up urinary tract infections.

What is the Prognosis for a Person With Autosomal Recessive Polycystic Kidney Disease?

Between 20 and 30% of infants with ARPKD die hours or days after birth due to breathing difficulties. Of those who survive infancy, about 85% survive their first year of life, 82% survive to age 10, and 73% live past the age of 15. In one study, 42% of those who survived their first year lived to the age of 20.

As transplantation methods improve, it is expected that people with ARPKD will live longer lives.