Today is the day…Natalie gets her g-tube in a few hours. I am typing this while she is snuggled on my chest sleeping while Ben works a few feet away. The road to this g-tube was long and, honestly, yesterday I thought would never come. We gave our official approval last week to move forward with the g-tube. It took Ben a little longer to feel ok with it all but then again, I have always been more impulsive and Ben takes more time to think things over so this is no surprise. When we gave the ok, last Thursday, we anticipated them adding it to the schedule pretty quickly. We knew it could take a week for the surgery to take place but we thought the scheduler would call me that day to get in the books. That was not the case.

Thursday came and went but that day was crazy in the NICU (3 babies born in the 6hrs I was there) so I thought we would have a date that Friday. Then Friday came and went and I knew we would have to wait through the weekend. Each day this week my frustrations built knowing this is the last step to get her home. By Wednesday, I decided I had had enough waiting and I reached out to a friend who I knew would also be Natalie’s surgical nurse for the procedure just to see if she knew of any secret steps to move things forward. She said she would look into it. Thursday afternoon the NICU team called for our daily update. They said they still hasn’t heard back about a surgery date and that in reality, since it was so late in the day, she would go the weekend without it and maybe get it next week. At this point I was done. My frustration was officially over and I was pissed. Literally the only thing keeping Natalie in the hospital is waiting for this feeding tube, it had been a week since we gave consent, and she wasn’t even on the calendar.

I decided to reach out to social work to see if there was anything they could do to help. Our amazing social worker, Claire, said she would file a report with patient services and see if they could help. Well, not even 5mins later, Megan came through. She called me and set up Natalie’s surgery for the next day. What a huge relief. So, here we are, anxiously and nervously awaiting Natalie’s g-tube surgery. We are a bundle of emotions but, mostly, we are grateful. We are grateful Natalie is alive and healthy. We are grateful for the amazing nurses and doctors who have cared for her since the beginning. We are grateful for Megan for getting this surgery in the books. We are grateful to get this surgery done and over with so we can go home. We are grateful for each and every one of you who have supported us over the last 6+ months. We are grateful for the prayers, love, positive vibes, healthy juju, etc.

I’d like to share with you Ben’s Facebook post yesterday. He is the most incredible human ever and I am so lucky he chose me to be this partner in life.

Exactly five months ago today, Rachel was admitted into the hospital. It started Rachel’s three week stay in antepartum before Natalie’s grand entrance and subsequent time in the NICU. Every day for five months I’ve made the journey to the University of Minnesota Masonic Children’s Hospital (with the exception of being too ill one day and a snowstorm making it unsafe to travel across town with Patrick another day). In that time, I’ve witnessed Natalie make significant strides amidst a rollercoaster of impressive progress and terrifying moments where I wasn’t certain she’d survive. I’ve seen the strength, determination, love, and compassion radiate from Rachel day in and day out. I watched Patrick meet Natalie for the first time in a heartwarming fashion that still fills me with joy. I’ve heard excruciating wails of parents who lost their child in the NICU and have held my children that much tighter. I’ve received nightly greetings from the security guard at the hospital that bears similar familiarity as the greeting the bar patrons had for Norm in “Cheers.” Through the ups and downs Natalie’s journey at the hospital continues five months later in ways that defy expectations. That means for the time being, I will continue to make my daily trek to Minneapolis while hoping and praying that our family of four will soon unite to create fond memories together under the same roof of a loving home.

Thank you all for thinking of us and for your prayers. We apologize for not updating you all sooner, it’s been a rough week. On Monday Natalie spiked a fever and became very irritable. Monday night the team decided to run a full septic workup. While they tried to figure out what was going on with Natalie, talks of the g-tube went on the back burner. I had Tuesday off from work so I spent the day at the hospital. Poor Natalie was miserable. She needed Tylenol just to be able to sleep and whenever I put her down to pump she cried which is very out of character for her. We finally got the final results in at 5am Wednesday and it turns out that sweet Natalie has a UTI. She is now on antibiotics and healing. The team performed a renal ultrasound today to make sure there is not structural issue that would cause UTI. We are happy to report that her everything checked out and Natalie’s ultrasound was entirely normal.

Now that we have answers as to why Natalie was having such a hard beginning of the week, we can now work on the g-tube. Natalie’s feedings have further declined. Her best percentage this week was 3% of her feedings orally. It’s just not remotely realistic anymore that she won’t need a g-tube. We gave the officially green light to move forward with the g-tube on Thursday. We were hoping to have a date set yesterday but there were 3 NICU babies delivered during the 9-5 business hours so it was a crazy day for the whole NICU staff. They put in the referral today but the surgical team has yet to set a date so we won’t know the official surgery date until Monday or Tuesday of next week. We do know the surgery will take place after the 25th once her antibiotics are done.

We are anxious and just ready to get this part over with. Obviously, we would love a miracle and for Natalie to start eating orally again so she won’t need the surgery but, since it seems pretty inevitable, we are ready to get it done so we can get her home. It’s been 127days thus far. We are physically and emotionally exhausted and ready to be a family of four under one roof. We thank you all for your continued love and support. We will do our best to update you in a timely manner.

Here is a picture of our premie warrior princess rocking her IV on Tuesday even though she was oh so miserable!

It’s been a long couple of weeks. The comparison that the NICU journey is a roller coaster has been especially true the last couple of weeks. It’s no secret that the only thing keeping us in the hospital is Natalie’s feedings. She needs to take 80-100% of her feedings orally in order to come home. The last week of May, Natalie was doing great in her feedings. So well, in fact, they had us take a discharge class and asked us to bring in her car seat for a car seat test. Then BOOM! Natalie went from eating 73% of her meals orally to 20%. It was devastating. Last week the team asked to meet with us to discuss a g-tube so Thursday we sat down with her neonatologist, RNP, her two primary nurses, and her OT therapist to discuss a g-tube. If you’re curious about a g-tube, check out this website:https://kidshealth.org/en/parents/g-tube.html

Natalie’s team decided to give her the weekend before deciding 100% to give her a g-tube since Wednesday and Thursday her feedings had moved up to the high 60%. Then BOOM, she plummeted again. This whole weekend she has only been taking maybe 20% by mouth. She has always been a big fan of her pacifier and this weekend she doesn’t even want to take that. Bottles and pacifiers all make her gag. It’s heartbreaking and oh so frustrating. We are pretty sure we will get a call today asking us to move forward with the feeding tube. When Natalie decided she no longer needed oxygen support we were ecstatic at the prospect of her being sent home without any type of additional support (minus doctors follow-ups) but here we are. If you could all say an extra prayer for Natalie this week we would appreciate it. We would love prayers that things click before surgery so she doesn’t even need it but we would also love prayers that is surgery is what she needs, that it goes smoothly!

My dearest Ben,

One of the things that first attracted me to you all those years ago was how good you are with kids. I always knew I wanted to be a mom and always looked to find a partner. Some men learn to be good dads, however, you came by it naturally. Daddy was a role you were always meant to be. I love watching you with Patrick. The joy he shows every second you are together fills me with so much love I often feel as though my heart could burst. How quickly you took to being a dad made it so easy to want to give you more kids.

Here we are, two Father’s Days later and now with the kids and I think it’s safe to say this is never how either of us ever dreamed to spend it; waking up in separate cities, spending our time after brunch talking about surgery for our daughter, splitting our time so that we both get time with Natalie while not trying to interfere with Patrick’s daily schedule. However, as I sit and reflect on Father’s Day this year, I have never felt more lucky to have you as my partner and as the father to our children. These past few months have been insane but you have handled them with strength, patience, optimism, and love. You took to being a single dad while I was living in the hospital like a pro. In these past few months where we average maybe 3-4hrs of sleep a night, you never complain, never lose your patience. Instead, you stay optimistic, even when my hope is lost. You still work full time to provide for our family and still do cleaning and cooking around the house while also juggling a toddler and an infant in the NICU. There are no words to describe how truly amazing you are. All I can say is thank you! Thank you for being you, thank you for being the worlds most amazing father, thank you for being my partner. I love you beyond words and we are just so so lucky to have you! Happy Father’s Day!

Natalie Jane is officially 4months old. We can’t believe our little warrior is 4months old. The time has flown by. She is officially 9lbs 10.5oz and is 20inches long. This last month Natalie took herself off of oxygen support and met her Auntie Carolyn. We can’t wait to see what this month holds for Natalie and us as a family. Obviously our biggest hope is that Natalie will be able to come home. Thank you all for your continued love and support!

Feisty. This is the word doctors and nurses have used to describe Natalie since day one and the more she grows, the more often we hear this word. We also often hear opinionated Natalie is and how good she is at making her feelings heard. For the last few weeks Natalie has hinted that she feels she doesn’t need oxygen anymore. She will take the nasal cannula out of her nose and she is often found like this…

They even decided to give her the benefit of the doubt last week and tried to wean her oxygen from an 8th of a liter to a 16th. That did not go well and didn’t last long. Well, on Wednesday, May 22nd around 5pm, Natalie decided ‘to hell with weaning, I’m just done with oxygen’ and fully took off her nasal cannula. The nurses and doctors decided ‘what the heck, let’s try it’. Well, here we are Friday morning and she is still oxygen free! We are so proud.

The face you make when your doctors and nurses rat you out for taking matters into your own hands…

“Who Me?!?!?!”.

How do you celebrate being oxygen free? Why with your best ‘Blue Steel’ impression of course!

Mother’s Day was special this year. My mom flew out and spent 10days with us, including Mother’s Day. It’s always been her favorite holiday. She spent my first Mother’s Day with Patrick with us and now my first Mother’s Day with Natalie. Saturday Night is my sleepover night at the hospital so I kicked off Mother’s Day by spending the morning with my favorite girl. I then met mom, Ben, and Patrick our for breakfast at a place called Black Coffee and Waffles. It is a cute little coffee shop with killer waffles. We were all members of the clean plate club. We then played at a park just outside the coffee shop. Patrick, as always, had a blast. It was important to me to get a picture with both my miracles on my first Mother’s Day as a family of four. Patrick passed out on the way to the hospital and stayed asleep all the way up to the 11th floor so he napped at the hospital before pictures. Once he woke up, we did family pictures. After some pictures and quality time, Patrick and Ben went off for a bit and mom and I stayed with Natalie. We decided for a special treat, that after girl time, we would take Patrick to the MOA. There, we went to the Aquarium which was just so magical. There is nothing like watching the excitement in your child’s eye as they explore something new! We ended Mother’s Day with dinner at the rainforest cafe. It was more of a ‘take turns eating’ so patrick could explore all the animals. Overall, it was the best Mother’s Day. I am just so blessed to have two incredible kiddos who make my heart burst everyday. Oh! And Natalie gave me the best gift. She took 32% of her feedings by mouth. A personal record!

May 12th was not just Mother’s Day, but it was also Natalie’s 3month birthday! She is officially 7lbs 7.9oz. For her 1month birthday she look 32% of her feedings by mouth, the most she’s ever done. Orally feeding is her biggest obstacle before going home. Ben asked the doctor if she had an idea of when Natalie would be able to go home. She hemmed and hawed for a bit and then said that she thinks at least 3-4more weeks. Obviously it could be sooner but it could be longer. We just have to wait until Natalie tells us she’s ready. While we are so impatient and are dying to get her home, we have a good routine and make sure to see her everyday. We love our little warrior. We are just so lucky that Natalie chose us to be her parents!

‘Due Dates Are Dumb’- Natalie Jane

Back in August, we went in to for our ultrasound. The doctor looked at how far baby was measuring and said our due date was May 8th. We burst out laughing. May 8th was also Patrick’s Due Date. I often said during early pregnancy that I hoped they would not share a birthday and that I hoped Natalie would come a day or so before or after Patrick. Unfortunately, Natalie took that wish a little too seriously. Instead of coming on her due date, Natalie turned 85days old.

So the question on everyone’s mind now that we hit her due date….’When Is She Coming Home’. The easy answer is we have no idea. We aren’t hiding information or keeping things a secret. The truth is, we don’t know, and honestly probably won’t really know until maybe 24-48hrs before she is set to go home. Premies don’t have a set date for going home. They aren’t sent home when they hit a certain age, it’s more about when they are ready. For Natalie, she still needs to figure out eating. She needs to take all of her feedings orally. Right now, she is only at 13%. Once she has feedings down, she will undergo a car seat test and maybe if that’s successful, we will be able to bring her home. There is just a lot of unknowns right now. She is healthy, growing, and doing well. Thats what counts. She is doing better than anyone thought she would. Now, we just wait for her to be ready to come home. Hopefully it’s sooner rather than later.