THE STENTS WERE OUT!

Ty was struggling so much to breathe and it was definitely holding him back from eating. The only way he would get to go home was if he could eat every feeding on his own and not through the feeding tube. So the doctor said he would come in over the lunch hour and we would possibly take them out. We did not try to feed him at his 10:30 so he wouldn’t be stressed out when we pulled them.

The doctor arrived and he asked me if I wanted to pull them. I was nervous but being able to remove something from my son that was causing him so much stress was exhilarating! I pulled them! They just slid right out. They were extremely clogged and we were all shocked that he could breathe at all.

I cried. It was a huge, emotional moment for me.  As soon as they were out, he blew a huge booger out and then he could take a deep breath. I just held him and loved him and celebrated with him. He didn’t eat much right afterwards because I think he was exhausted from just trying to breathe for so long that once he could, he went right to sleep.

I went back for his 4:30 feeding and he did awesome. He only nursed about 5 ml from me, but he took 40 ml from a bottle and without oxygen. Ty could finally eat and breathe again. It was such a relief.

I felt like I ran a marathon today. I began the day with a “power pump” for my milk. Something one of our nurses and I talked about to keep my milk supply up. I wasn’t sure it worked though because I was pretty dry then at noon – not even a full bottle.

Then I prepared stuff for one of my cleaners to clean a house. I applied Icy Hot to Rocky’s back that was slowly healing. Talked with Tim a bit more regarding the ex-girlfriend issue. Ugh. I then received a call from the Social Security administration verifying information on our application for Ty. I didn’t expect a response that quickly but it was a good sign.

I then went for Ty’s 10:30 feeding which was about the same as yesterday. 5 days and counting. I couldn’t wait. The days couldn’t go fast enough.

I attended a lunch and learn that the hospital put on for NICU parents. Today’s lunch was about what the nurse liaison did and what resources were out there for Ty with his prematurity and Down syndrome issues, whatever those might be, and where to start. Larimer County and Fort Collins were amazing at the support and information they provided. I was impressed but overwhelmed.

Life just wouldn’t slow down. I was tired of the roller coaster and just wanted the merry go round for awhile, where the ride was slower and more consistent.

Happy 4 week birthday superman! You are such a fighter!

Today was a struggle again to eat. I didn’t think his feeds would pick up until the stents came out.

Rocky and I met with the hospital’s financial office to talk about Ty’s social security benefits. What a process that was. It was like buying a house.

I heard back from the ex-girlfriend. It was the typical classy response I expected but at least it was hopefully behind us.

I went in for Ty’s feeding at 10:30 full of hope. He did so well yesterday that I felt like he had make huge strides. Ty was working so hard.

But when I got to the NICU, Ty was on his tummy and his bed was tilted up. His nurse sad that Ty was plugged up again and the secretions had increased. They thought it might be due to his feed intake and that he maybe refluxing his milk through his nose. They plan to slow his tube feeds to an hour instead of 30 minutes, only bottle feed him when I was there (at his 10:30 and 4:30 feedings), and lay him on his tummy and tilt him up when he feeds. Everyone felt that once the stents came out he would do much better. I wanted to hope so, but I was afraid to hope too much. We had such great feeds like yesterday and I would get hopeful that we were getting close. Then we had a setback like today and I felt defeated. The roller coaster ride never seemed to stop.

When I held him he never even tried to suck so we just gavaged him. The nurse liaison came to talk to me about contacts for insurance, doctors, etc. She put some things at ease for me and helped me set up an appointment to talk to the hospital about coverages for Ty. That helped me put my mind to rest some.

We were still having some issues with Tim’s ex girlfriend. I had such bigger things to worry about but I sent out an email regarding my feelings on the situation. It was only my business because it affected my daughters and I didn’t need the drama.

Ty struggled through his 4:30 feeding, too. He took about 12 ml but couldn’t breathe through most of it. The days couldn’t go by fast enough before he got those nose plugs out.

Ty had another rough day. He had his eye exam. Often Down syndrome children have vision and hearing problems, so his vision test was a big test. But it was stressful and exhausted him for his 10:30 feeding. He ended up throwing up some of his milk, then he pulled his feeding tube out during his feed, threatening to leak milk into his lungs again. We ended up just putting him to bed, I pumped and we left. The good news was that his vision test came back normal! That was awesome news and totally worth losing a feeding for!

I finally got my invoicing straightened out for my business. It had turned into a tangled mess. As though each account was a string and they became one big knot. I literally had to untangle them, one account at a time. But the large knot constituted an entire month’s worth of invoices which put us in a major financial crunch.

Before we found out we were expecting Ty, Emma had been nominated and accepted to participate with an organization called People to People. She would travel for two weeks with a group of students and chaperones to Australia and learn about their culture, geography, and history. She (or I should say “we”) had to pay for the trip ourselves, so we put together quite a few fundraisers to help offset the cost. It was a lot of work and quite the undertaking, so I was glad that we almost had her trip paid off. She wasn’t due to leave until July 11, so we hoped Ty would be home before she left.

I went back to the hospital for Ty’s 4:30 feeding and he was a whole new man. He took his bottle and ate 51 ml. That was ¾ of his feeding. He was wide awake and we even had a chance to play. For the first time I was able to interact with him for reasons other than just his cares. Oh the difference one feeding can make! Progress. Slow progress.

It was so nice to get to know Ty’s nurses. I felt like they were family. In a way they were because they cared about Ty as if he were their own. There was an unexplainable bond with a few of them. We had one of our favorites again. She had taken Ty’s picture and made a scrapbook page for his wall. She told us to start taping pictures on his wall. She suggested Emma and Madi bring pictures in for him. The scrapbook page was adorable. I was so glad that he was being cared for by people that truly cared about him.

Ty took 35 ml. Between 5-10 ml from me and 20-25 ml from the bottle. Again, the most he’s ever taken on his own.

I talked to one of the nurse practitioners about having Ty circumcised. She said we needed to decide on a general doctor for Ty and then they could get his circumcision scheduled. Ty’s feedings was up to 68 ml per feeding. There was no way I could keep up with pumping what he needed so we also talked about combining formula and breast milk. Our nurse sat with me while Ty ate and we talked. About everything. I explained to her how overwhelmed I felt. With insurance and Medicaid. With Ty’s Down syndrome and his needs for occupational and physical therapies. With what Foothills Gateway could do for us and that I hadn’t heard from anybody.  She told me she would have the nurse liaison from the hospital get in touch with me to go over all of that. I was so grateful to have someone that could walk me through the process.

Our nurses became so invaluable to me. They had become my family. They were the women that kept me together while I was there. They supported me so that I didn’t fall apart when Ty needed suctioned or struggled with his feeding. They helped us celebrate the smallest of accomplishments, like getting good boogers out of his stents or each time he surpassed his previous feeding record. Because those things became the big things in Ty’s world. And his nurses became my glue to keep me from falling apart.

Our other nurse that we’d bonded with was back today. Ty seemed to be doing better and he did awesome for his 10:30 feeding. He took 10 ml nursing from me and drank 20 ml from the bottle. That was the most he’d ever taken on his own. He seemed to get better and better every day with his feeds. As long as he could breathe. His breathing was so clear. They continued to give him antibiotics which must have been working because he didn’t seem nearly as clogged. He was receiving them through his feeding tube though, instead of the IV which I was happy about. I hated having to see him with an IV poked into his little body. His eyes were watery and he had some build up so we tried to keep them wiped clear during his cares. The NICU doctor said that it could be due to a clog in his tear ducts. She said that eventually they should open up, but if they didn’t, they may have to do a surgery to open them up. I prayed that wouldn’t happen. That was the last thing Ty needed.