When Natalie moved out of the small baby unit, she was moved into nursery 3. Nursery 3 was bright, open, and always with full beds. We saw tons of babies come and go while we were there. When we first moved to nursery 3, there was a family on the far side of the room that I always remembered. I honestly didn’t so much remember the baby, but the parents. The mom was always smiling and the dad always looked like his heart was breaking. After a few days, maybe a week (that time was still a blur), they moved out of nursery 3. When Natalie moved into nursery 6, I realized that baby had been moved into a quarantine single nursery that I passed every time I went to see her in nursery 6. It wasn’t until we were discharged and a part of a Facebook group for Minnesota NICU parents that I learned the parents names as well as the baby’s name, Zephyr. Mom has been very open in this Facebook group about her sons health and all the struggles he faced. A few weeks ago she posted about how Zephyr was due for a heart surgery with only a 20% survival rate. I’ve been meticulously watching Facebook for updates, hoping and praying for the best. Sadly, today, mom posted that Zephyr has an infection and that they will be taking their son off of life support tomorrow. A couple of hours ago she posted pictures of her and her family taking their son outside for the first and only time so that he can feel the sun on his skin and the win in his hair. She also made a post about how tired she is and yet she refuses to sleep because she does not want to miss a minute of her remaining time with her son. My heart is breaking for this family. I just cannot imagine what they are going through. I’m not sure why I’m sharing this other than to say, give your loved ones an extra hug tonight. Make sure you tell them that you love them. Tonight, I rocked Patrick to sleep and cried when he dozed off thinking of this family and the fact that this will be the last night they will rock their son to sleep. I laughed and talked with Natalie while ben changed her diaper thinking how lucky we are that Natalie is here and that she is healthy. While you hug your loved ones tonight, say a prayer or send some love to Zephyr and his family.

This little roly poly bug just had a heart echo and a follow up with the cardiologist. Great news! The holes in her heart have closed and the heart murmur is gone. The cardiologist does not feel we need any further follow-ups!

We still have plenty of appointments coming up including ENT Followup on Wednesday, endocrinologist follow up next week, NICU follow up, ultrasound on Natalie’s ovaries to make sure they are cyst free, plus speech and PT every Friday (just to name a few). We are hopeful that Natalie will continue to amaze us with her strength and perseverance! She truly is a little miracle!

And in the blink of an eye, Natalie is 6months old. It’s a weird feeling. Part of me feels like she has been here forever and that she has always been a member of the family. Another part of me feels like she was born yesterday and she can’t possibly be 6months. While I know these are typical feelings of every parent, I feel as though these feelings are heightened due to her early entrance into the world and the fact that she was almost 5months old before she was able to come home.

As I sit back and look back over this last 6months, half a year, and I can’t help but reflect on the day Natalie was born. While many aspects of that day are a blur, I will never forget the first words out of my mouth. I hear them tell me she is out and I just kept saying ‘Is she ok? I don’t hear crying! Is she ok??’. It’s terrifying being in the delivery room and hearing silence, especially when for the last 7 weeks every keeps reminding you your baby is in danger and may not make it. While the doctors said she was ok, the truth was they were scared too. Being deprived of fluid had turned Natalie’s lungs into the consistency of paper and they truly weren’t sure she would make it through the night. However, Natalie proved everyone wrong. To this day, she continues to defy the odds. It’s been incredible watching Natalie grow these last 6months. She is truly the strongest human I know (and that says a lot). Ben and I are so honored to be her parents! We are so lucky! Happy 6months dear sweet Natalie! We love you!

The past week and a half have been a blur, in a good way. I feel as though this blur is much like any newborns first week at home. There is a change of schedule and routine and simply figuring out life with a new human at home. Despite it being a blur, we honestly couldn’t be happier. It’s so wonderful being a family of 4 under one roof.

Natalie has a ton of appointments we are trying to navigate and get more on a schedule for when I go back to work. There are the typical pediatrician appointments every infant has and then we have PT, OT, Speech, surgery follow up, ENT, lactation, feeding clinic, endocrinology, and possibly cardiology. I honestly feel like there may be more that I am forgetting at this point.

In our first 1.5weeks, we have done appointments with the pediatrician, PT, OT, and lactation. The pediatrician appointment was great. We truly love Dr. Khoury and Natalie is doing well with where she should be at the adjusted age of 2mos. It is confirmed that Ben and I make little peanuts. Even on the adjusted scale, Natalie is only on the 13th percentile for height (Patrick is about the same for his age).

Natalie also had a great appointment with PT and OT. It is confirmed that she does have a flat spot on her head and may need a helmet in the coming months. She also has torticolis. We have stretches we are doing to hopefully fix the torticolis in 1-3mos and that will also help with Natalie’s flat spot. In terms of OT, Natalie is doing exactly what she needs to be doing for her age so she tested out of OT. Speech and PT will continue to follow her and if any concerns come up, the referral is still there but it’s nice to know she is rocking that. PT, OT? What does that all mean. PT (physical therapy) is for all of Natalie’s gross motor development. OT (occupational therapy) covers fine motor development. Speech will take care of her eating. We are also working with a lactation specialist through our pediatricians office to work on Natalie eating. Nicole was instrumental in our success with Patrick’s breastfeeding so we are hoping she can work miracles with Natalie as well.

Aside from appointments, we are getting into a groove. The hardest part I feel was figuring out the g-tube and getting that into our routine. We have spilled milk, accidentally left tubes clamped, you name it. When we brought her home she was eating every 3hrs over a period of 2.5hrs. We have now gotten it down to eating every 3hrs for only 45mins. We still struggle a bit with time management and getting out the house but we are slowly getting it.

Patrick is such an awesome big brother. He runs into our room every morning and b-lines it to the pack-n-play to check on Natalie. If she cries and we are in another room, he runs to us to inform us ‘baby crying’. He gives her kisses and loves to turn on her chair for her (it rocks, vibrates, and plays music). He has tried to bring her cups of water and lemons.

If there were secret cameras in our house, there would be far too many videos worthy of ‘America’s Funniest Home Videos’ as we figured out being a family 4 with a more high needs infant but we couldn’t be happier. We love you all and thank you all for your continued support. Here are a handful of pictures from our 1.5weeks at home!

We will do a long post to update everyone how our time at home is going but…Natalie turned 5mos on Friday! She is such a smiley, happy girl and it is obvious she loves being home! We are so grateful and so lucky!

It’s been a week. On Tuesday we were thrilled when the team of doctors told us that Natalie could go home on Wednesday. We wanted to shout it from the rooftops but we were also hesitant because anything could happen. And it certainly did. On Tuesday, just to make sure all our ducks were in a row for discharge, Natalie got her 4mos vaccines. In true infant form, shortly there after, she spiked a fever and got super uncomfortable. Just to be safe, the doctors did a full work up. They did a catheter to check her urine for infection as well as did a blood draw. Poor Natalie inherited my veins and she is a hard stick. It took 2 doctors 4 pokes to get blood enough to run tests only to find out an hour later that the resident forgot to order one of the tests and so she had to get stuck again. Poor babe had had it at that point. We gave her Tylenol to help with the fever and discomfort her fever and after about 1am on Wednesday she was fever free.

Wednesday morning. Surgery team came down and said that we should be discharged. The head surgeon that day said quote “Get her out of here and you tell the doctors to stop piling your baby!”. Then the pediatric resident cane down (different one from Tuesday night) and said we were still on track to go home, that she is clear of infection, and that they will start discharge protocol. We were so excited. Then the whole team of pediatric doctors came in and the lead doctor who is also an infectious disease doctor vetoed everyone. He said he wasn’t comfortable sending us home until she was 24hrs fever free, especially with the holiday coming up. While we knew he meant well and had the best of intentions, we were crushed.

Thursday, we were told we would go home. We were hopeful but not counting our chickens for fear something would come up. Luckily, everyone agreed we could go home. The catch…we were essentially cleared to go home around 9am but because Natalie’s supplies wouldn’t be delivered until 2pm, they wouldn’t release her until she had 2 successful feedings at the hospital and we knew the equipment was at the house. It was a long afternoon of waiting but just before 5pm on 4th, Natalie Gaines her independence from the NICU and we were headed home.

Here are a few pictures from our discharge!

Wishing you all a Happy 4th from our HOME to yours!

(We will give a full update in a bit)

Although Natalie’s surgery turned into 4 procedures and what was supposed to be 2hrs turned into 5hrs. So…how is she doing today? Overall Natalie is doing well. She has several small incisions all over her poor little belly. She has slept most of the day but is starting to be a bit more alert. She is taking Tylenol and has occasionally needed a bit of morphine to take the edge off. At 10:30pm she will start using her g-tube taking in a very small, steady amount of pedialyte. We will move to breastmilk hopefully shortly thereafter. We are just in awe of her strength. She is such a tough baby and handles everything with perseverance and strength. Oh…and she is now 11lbs 12oz! Daddy will be staying the night with her. Hopefully they both get lots of sleep!

Sorry for the delay in a post. Yesterday ended up being much more than we expected. Here is a summary of the afternoon. About 10mins before surgery we opted to do a Nessen as well as a g-tube to help with her reflux. While in surgery, they discovered Natalie had a hernia near her reproductive organs so they opted to fix the hernia now and not risk it getting worse. The doctor also discovered an ovarian cyst so they drained that as well. A quick 2hr procedure turned into 4 procedures in 5hrs. It’s been a day but she is a champ! Thank you all for all the texts, posts, and messages today and thank you for all the prayers, love, and good vibes!

Today, as we sat in the pre-op room, we had an 11th hour decision…do we go for a straight g-tube or do we add a Nessen with the g-tube. What is a Nessen, you may ask. As we have stated earlier, Natalie’s reflux is off the chart. The radiologist and Occupational Therapist described it as a volcano. A quick and crude explanation of a Nessen is when they wrap part of the stomach around the esophagus to help minimize reflux. There was a time when doctors used to constantly do Nessen with g-tubes. More recently, as Dr. Segura explained to us, the pendulum has swung the other way and doctors don’t do it often, sometimes when it would be beneficial. Natalie is a great candidate for this procedure do to her history. Our surgeon consulted with NICU, radiology, and her OT about a Nessen and everyone agreed it could be a good idea. So as we sat in pre-op, 10mins before surgery, we opted to go ahead with the Nessen as well as the g-tube. This will mean the surgery will be a bit longer and more in depth but hopefully this will help Natalie’s reflux. Natalie has currently been in surgery for an hour. So, for now, we continue to wait.