Home

Piper is home.  We are home in Seattle.  Finally.  All of the pieces that have been scattered throughout our hearts and minds have slowly, piece by piece come together.  Two weeks ago I still stared at my unfinished puzzle, gaping holes left me breathless and teary eyed.  One baby still was not home and her arrival home was postponing our move to Seattle.  We were living in a hotel.  Nate was leaving in a few days to start his new job.  We had no idea when Piper Hope would be discharged.  Bent puzzle pieces littered the floor and were scattered all over the table.  I felt as if I was staring hopelessly as I wondered how the final pieces would come together to create the beautiful picture Nate and I had dreamed of and the picture the puzzle was supposed to portray.

Nate and I, again, walked into the NICU on Father’s Day toting Lincoln along in his car seat.  Another day in the NICU.  We felt a different heaviness as we entered the room that day because the following day Nate had to leave for Seattle indefinitely.  We went through the motions of caring for our children, loving on them and cuddling with them but the weight of what was about the happen loomed like a cloud about to burst with rain above our heads.  It threatened to crack open and send liquid flooding down to drown us at any second.  How much more could we take?  There seemed to be no end in sight.

However, the doctor had different plans.  To make a very long story short, since Piper was going to be going home on an apnea monitor, he did not see any reason to not send her home.  Honestly, we could not get out of the NICU fast enough.  The first time Piper was discharged, teary hugs and touching goodbyes followed us out of the NICU and it was hard.  We were leaving our friends.  Our family.  This time, none of the nurses who cared for Piper consistently were there so we just packed up quietly and left.  No pictures.  No tears.  Just the 4 of us.  Tagging along, however, was fear and nervousness that hid behind our tight lipped smiles.  A feeling of dread about what was to come that we did not have the first time we left with Piper enveloped us.  We were afraid.  Would she have another incident at home?  Would she recover?  Would we know what to do?  How could I take care of two babies with Nate gone?  How were we going to get to Seattle?  I do not even think we were able to enjoy Piper coming home because her being home opened up another round of stressors and complicated scenarios.

A week after Piper came home we were finally in Seattle.  Our new home together as a family.  Finally.  I cannot believe it.  We made it.  Piper is doing so well.  Lincoln is his usual go with the flow little dude.  Thankfully, we did not have to make this transition alone and my mom was able to help us with the move and with the babies.  I still feel like I need to pinch myself.  I look at the completed puzzle and I cannot believe we made it.  We did it.  Now I can put this puzzle aside and admire the beauty from the distance while still remembering the pain of the process of putting it together and begin a new one with a picture of our new family in our new home.  Home.  Home.  Home.  We are all finally home.

June 15 – Day 116

Thursday marked 16 weeks since Lincoln and Piper were born.

16 weeks.

114 days.

Easter, my birthday and Mother’s Day and my due date have all passed. Winter merged into Spring and now we are quickly approaching Summer and Piper is still in the NICU. All along the doctors have told us to aim for my due date, give or take a few weeks. A few to me is one or two. Tomorrow will be 3 weeks past my due date and my daughter still isn’t home. She looks like a healthy 8lb 8oz full term baby but she still is not ready to leave the NICU.

We have taken her off of breast milk and put her on a thick formula. We have taken her off that formula and put her back on breast milk thickened with rice cereal and fortified with formula to add extra calories. She now sleeps on a wedge and is held on an incline by a sling.

She now sleeps in a bed large enough to hold a 350lb child but she’s still not able to come home.

Doctors all seem to have the same response when we speak with them regarding Piper. They shake their heads, turn their eyes to the ground and say that they do not know what else to do. They have tried everything so we wait for her to tell us when she is ready.

Our patience is wearing thin. Our nerves are beyond frayed. We want our family together and at home, for good.

To complicate matters, we found out in October (the same week we found out that we were having twins) that Nate was being promoted to become the VP of Sales in Seattle, Washington. His job was supposed to start in March but because the babies were born, the move was postponed until June. We thought by this point the twins would be home and we could all move to Seattle together but unfortunately that is not the case and Nate will be moving to Seattle without us. We have already moved out of our home and we are living in a hotel. Nate will leave for Seattle on Monday to start his new job on Tuesday and he will most likely stay up there until Piper comes home. We are so thankful for the blessings o our children and Nate’s new job but the timing is not ideal by any means.

I keep telling myself that it won’t be this way forever and in the grand scheme of things 4 months is really not that long but living in it feels like forever. I can’t wait to cross over the threshold of our new home in Seattle together. As a family finally home.

June 11 – Day 112

After revealing how many days Piper went without a Brady in my last post, the Little Miss decided to have, not one, but TWO Bradys which had extended her stay at the NICU just a bit longer. Usually when babies are preterm the neonatologists wait 7 days post Brady before the send the babies home but since Piper is well past full term, they will only wait for her to not have an episode for 4 or 5 days before discharging her. Only 4 or 5 days doesn’t seem bad, you say? That is what we said too but it is pretty difficult according to Piper Hope.

Because of how often she has been having Bradys the doctors have decided to send her home on a heart monitor to alert us if she has an apnea while eating or sleeping. Thankfully all of her episodes are self recovered and do not need any intervention or stimulation from us but we still want and need to be aware if they happen at home. Piper will also be coming home with a piece of equipment called a wedge to help her with her reflux. She still has not been officially diagnosed with reflux but I say if the wedge helps her, let’s continue to use it!!

Because of the incline on the wedge she has to be strapped into a sling to keep her from falling off. This contraption seems uncomfortable but she seems to be tolerating it quite well. Also, since the wedge is so large, she has been upgraded to a pediatric crib which holds up to 350 pounds. I have been tempted once or twice to get in the bed and cuddle with her.

All we can do is continue to hope and pray for continued growth and maturity on our little girl so she can come home and stay home!! Until then, we continue to spend time with her every day cuddling with her an leaning more about our little miracle girl.

Lincoln has done so well in the three weeks he has been home. We have adjusted really well to him and feel like we have been able to bond and really learn about our little man. He is a great eater, is super social, such a great cuddler and, over all, he is just a really good baby. He has definitely stolen out hearts.

Now if we could just get Piper home, that would be great.

June 7 – Day 108

The doubled edged sword of the NICU where Piper is is the fact that every week, a new neonatologist is scheduled. When they were in Sutter Memorial Lincoln and Piper a new neonatologist would see them every day which gave us little continuity and consistency as things seemed to be we changing. In Roseville, the same doctor is on for a week and a new one comes the following week. This can leave you feeling like you are not getting answers and you are running into a brick wall over and over if the neonatologist who is scheduled is very “by the book” and unwilling or able to look at other options, or think outside of the box. I understand that each doctor has his/her own experience, comfort level and personality but it can be extremely frustrating. On the other hand, if you have a doctor who is more open to customizing a plan for your specific child and come up with a unique game plan, it is a welcomed thing to have the same doctor on for several days in a row. Thankfully, this week, our doctor was willing to try something new since obviously what was being done in previous weeks was not working.

There seems to be a debate about what Piper’s issue is. Is it reflux? Is it regurgitation that makes her close of her airway? Is she still learning to suck, swallow and breathe and be coordinated? Is all of this a preemie thing that she just needs to grow out of? Each doctor and nurse had their own opinion and take on what is going on with Piper. Last week we made a plan with a doctor who was pretty convinced that Piper’s issue was prematurity and simply needed to outgrow that and she needed more time. Not that Nate and I disagreed completely but we did not think prematurity was solely responsible for what Piper was facing. However, we agreed with the plan that the doctor came up with. Have continuity with nurses and only schedule nurses who have had her multiple times and know her sensitivities, keep her on monitors at all times, allow her to eat what she wants, use a preemie nipple when feeding her etc.

Towards the end of last week we felt like we had not gotten anywhere and Piper was still having consistent Bradys and we were beyond frustrated. We felt like we needed to do something different but we did not know what. Thankfully a new doctor came on Monday and even though she was a bit baffled at why Piper was still struggling she was willing to think outside of the box a bit and try something new. Even though Piper does not fit the “reflux” mold she said it would not hurt to try a few things that can sometimes work for babies with reflux. We put her on a thickened formula that usually does not come back up as easily. We also raised the head of her bed and she lays on her stomach for an hour after she eats to help keep the formula down. All of these minor tweaks seem to help. I feel like if I put all of this into words, I am going to jinx her and she’s going to start having Bradys again. But so far it has been 2 1/2 days since her last one and her nurse today commented that she seems like a different baby since she had her earlier in the week. Here’s to hoping that her no Brady streak continues and she can come home again soon and this time for good.

June 1 – Day 101

Thank you to everyone who has called, texted, followed up and checked on our Piper. The support has meant such a great deal to us and our family feels so loved and cherished. Having a child/children in the hospital is such a scary and unknown road having people there to hold you hand as you walk makes it more manageable.

When Piper was first re-admitted to the hospital she started having bradys almost every time she ate, again. We thought that she had grown out of that issue but having her back in the hospital and on heart monitors showed us that she was not mature enough yet. Thankfully her volumes of milk that she was taking was increasing and she was gaining a slow and steady amount of weight each day but the heart rate drops were concerning, for obvious reasons. All of the doctors and nurses assure us that even though Piper looks and is full term, she is still considered a preemie and has more developing to do.

Each time Piper has a Brady, she buys herself 7 more days in the NICU so we can all be assured that she has grown out of this scary and potentially life threatening issue. The first few days were so frustrating as Piper was having these episodes with almost every bottle. We felt like we were slamming our head into a wall over and over again as it seemed like we were not making any progress but thankfully it has been 36 hours since her last Brady. We hope that she will not have any more but only time will tell. So now, we continue to sit and wait and try to stay patient as we know that being in the NICU under the careful watch of the professionals is exactly where she needs to be. And one day, hopefully one day soon, she will be home for good.