A Letter to the Parents

After a difficult pregnancy diagnosed with TTTS, including TAPS, SIUGR or TRAP, you may find yourself in the Neonatal Intensive Care Unit (NICU).  This is a specialized unit at a hospital equipped and staffed with many loving medical experts doing all they can to take care of premature babies that may be critically ill or just need more time to grow.  The NICU is filled with miracle workers.  Viability has changed and is no longer set at 24 weeks.  Babies as early as 21-22 weeks are surviving.  If you find yourself in a situation where you could deliver that early, it is crucial to only go to a hospital where the NICU will fight to save your babies, not  a local community hospital closest to you!  Whenever possible, many will travel to Stead Family Hospital in Iowa as you can read about below.

Jade and her children including identical twins Keeley and Kambry

Jade and her children including identical twins Keeley and Kambry

The TTTS Foundation tries to do our part to help and educate the families we are supporting by sending out special NICU packages and directly supporting families through our Facebook NICU support group with our NICU Coordinator, Jade, who gave birth to her identical twin daughters at 22.1 weeks.  It is so important to surround yourself with other parents who have walked in your shoes who can offer tremendous help, guidance and empathy. 

Please join our NICU support group

Learn more about Jade

Partnering with Jade’s NICU The University of Iowa Stead Family Children’s here are helpful links including abbreviations in the NICU

We place so much trust in the angels involved in the NICU.  They are truly fighting for our babies in every possible way. Remember, though, that you are the parents to your children. You have the right to be extremely involved in their care and have the final say in their treatments. You are the ones needed the most by your babies. They know how much you love them. They love you with all their heart too.  Read here for more support

As you are advocating for your children, we are here to support you through the struggles, triumphs, sorrows that you go through along the way. Nobody can better support a parent going through the NICU than another parent who has been there.

From those that have gone before you

"When your baby first goes to the NICU, family, friends and complete strangers are eager to ask questions and jump in and help. Don't get me wrong the help and eagerness from others seems helpful and a blessing, but it can also be too overwhelming for a new NICU parent. The NICU journey is scary for all but is also a new sacred ground for NICU parents and their baby (babies). I recommend keeping life simple. Doing the bare minimums at first and focusing on what matters most will allow for your first few days or weeks in the NICU to rest, focus and be available."

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Keeley and Kambry-22 wks

My name is Jade Ewoldt, The TTTS Foundation’s NICU Coordinator.  I am the mother to Keeley and Kambry who survived twin to twin transfusion syndrome in the womb after diagnosis at 16 weeks and surgery at 18 weeks – born at 22.1 weeks due to PPROM and Chorioamnionitis. PPROM is typical in mother’s who have surgery to correct TTTS. Keeley weighed 1 lb and was 11.5”. Kambry was 13.4 oz and was 11”. Through all this, I’ve not been perfect, I’ve failed, I’ve struggled, but I’ve continued to persevere. If I do anything through advocating and raising awareness, I really just want to give others a voice and to walk along side them. I can truly say that no matter what hand you’re dealt, you can do hard things. I look forward to continue raising awareness and advocate not only for 22 weekers, but for babies and mothers everywhere.

Twin to Twin Transfusion Syndrome is a powerful disease, but it's not stronger than a mother's love.