The next two days were great... I was relishing the fact that I could just sit and cuddle my new baby before going home to my little army of chaos. Ruby was super sleepy and was not interested in eating. She had a rough entry and just wanted to be left alone to sleep and cuddle. By the second night, I started to worry that she wasn't eating. I could NOT wake her to eat. She couldn't latch on to me. She would try to latch and seemed so stuffed up that she couldn't do it. Her cry was very soft. All of this, everyone just attributed to her having a rough entry. Although she was such a sweetie, content and seemed to be doing well, there was just something deep down I couldn't relax about. Everyone that came to visit, I feel like I held back saying that I felt something was wrong. It just didn't feel as normal as it should have or did with the others. Later that night after Nathan got back from taking the kids home, I asked for a bottle to feed her to see if that would be any easier for her. She immediately started choking and turning blue. It was horrible. After screaming for a nurse and pushing my call button frantically, Nate ran outside and yelled for a nurse. As nurses rushed in, they helped her recover and reassured me that everything was fine and that she just needed to learn to swallow and showed me different feeding positions to help her. I admit to kind of rolling my eyes, thinking, "I know how to feed a baby a bottle. This isn't my first go round." I knew something wasn't right and that they had no idea. They took her to the nursery to see what they could do and at about 1am woke me up and told me she was in the NICU.
From there, no one knew what was wrong. They kept asking me if I delivered her early, thinking she just hadn't developed her swallow yet. All the answers were "no" and "the pregnacy was just like the other 3", " no complications". So they put her on an NG (nasogastric) tube after trying unsuccessfully to feed her and there we sat until someone had something else to try and the neonatologists could see her and give more options. One neonatologist suggested that we don't let her get lazy on the ng tube and continue to try to bottle feed her until they figure out what is going on. I really wasn't happy about that. He had not seen her try to eat. It was torture to watch her turn blue every time someone fed her a bottle.
Three days later we transferred to Cardon's NICU to get more testing done and see specialists.
Our favorite nurse at Gateway, pulled me over before we left in the ambulance and said, "you fight for your baby. Whatever they say, you KNOW she can't eat...DO NOT let them feed her with a bottle." Best advice I have ever gotten. I am the type of person to think the Dr.'s would have the answers because I don't know what's going on either, but her saying that gave me the ok to voice my opinion and say how I felt for those next 4 weeks. I am so thankful for that nurse. I felt like we did a lot of waiting for the miracle cure, but got nothing. Everyone was stumped. We started in the critical care unit because Ruby's oxygen levels were dropping into the 80's quite a bit. They want them to stay in the upper 90's to 100. Plus she was on an ng tube, but was getting such little amount of breast milk that they were monitoring how they could bump up her quanity. A few days after being there, the speech pathologist, Deann, took her in to do a swallow study, where we got to watch an x-ray in real time to see what happens when she drinks. They give her barium liquids of different weights, to see what she could swallow without choking. It starts at the consistency of breast milk and moves up to double honey. She failed all of the liquids. They all went into her lungs. Most cases they can thicken breast milk or formula and kids that have problems swallowing can drink thickened liquids. That is what we were hoping we could do.
We then saw Dr. Page, her ENT, to get a bronchoscopy done and see if he could tell what was going on. He discovered she had a laryngeal cleft, which is a rare abnormality of the separation between the larynx, or voice box, and the esophagus. They range from I-IV. Dr. Page now needed to take her and put her under anesthesia to see what if any repair could be done right then...however, she was also on oxygen and he wanted to wait until she was atleast strong enough to get through the surgery without complications...After the bronchoscopy he discovered a level II cleft and a small airway on the left side into her left lung. This lead to a future surgery date when her oxygen would stabalize, but also rose a concern about what else was going on inside her body.
It then seemed like every test under the sun was ordered for her...x-rays, ultrasounds, hearing tests, which she failed twice, an MRI, a CT scan, and echo on her heart, an eye exam. I couldn't believe she was having to go through this...yet more surprisingly there were no answers. None of those tests came back perfect, saying everything was great except for her cleft. She failed her hearing, she has bilateral congenital cataracts, she has a rough left ventricle in her heart and a larger hole than normal that should have closed after birth. Her corpus collosum (the connection between the right and left brain) is thin as compared to most, and she has low upper tone... AND to top it all off, they kept telling me, but that doesn't mean anything. It doesn't mean she won't function as a perfectly normal child. What on earth does it mean? Nobody knows. What else were they going to find. I honestly wanted them to stop running these tests so I didn't have to hear anymore. I have never been such an emotional wreck.
I swear they sent their counselors in to see if I was going to be ok, or if I needed to be admitted to the mental hospital. I am sorry, my baby is suddenly in the NICU and nobody knows what's wrong, she is being tested like crazy and more and more findings are coming to the surface. I am a BIT emotional.
But during this...I was given blessings, she was given blessings and lots and lots of prayers were said in behalf of our family and Ruby and conference talks were read and people fasted for us...and we knew that everything was going to be ok. Ruby may have complications, but we are going to figure her out. Eventually. I was still emotional, but knew deep down that Heavenly Father was in control. He's got this, and so can we. I just have to be patient.
At 3 weeks of lots going on, and still no complete answers, she was taken into surgery for her cleft. I was a wreck knowing she was going under anesthesia, but at the same time wanted to fix the problem. Fix it, so we can start feeding her and go home. She also has reflux, which seemed so small and insignificant in comparison. It mattered though, because if she was spitting up, it'd go right into her lungs. Because of this they decided to put her on 24/7 continuous feeds and have her sleep in a tucker sling to keep her upright.
Surgery took a couple of hours and the ENT came out completely positive about how it all went. He had amazing pictures and was excited to get her another swallow study. Her left lung did collapse and they found she had tracheomalacia and she was intubated for 24 hours. They were hoping that her lung would pop up the next morning and it did!! When they took her off of the ventilator she was able to breathe completely on her own and didn't have to be on oxygen since! Woohoo! Things were looking up and we were moved into our own room into a pod for kids who get to go home soon. It was as if Ruby had done a complete turn around since her surgery. She was breathing better, she actually opened her eyes for more than 5 min. at a time and we felt ready to be home and have our little family all under one roof.
We had a care conference with all the specialists (minus the cardiologist Dr. Ellsworth):
Everyone was a little more conservative on the time frame, compared to Dr. Page.
Dr. Allare (Neonatologist)
Dr. Page (ENT)
Dr. Carter ( Pulmonologist)
Dr. Yuen (Neurologist)
Deann (Speech Pathologist)
The plan was to get Ruby home and follow up on everything. Surgery had gone well, she was off her oxygen and she was like a new baby. We had been there 4 weeks now and were ready to get her home. We have been blessed with so many amazing specialists and nurses that really care for Ruby and have done so much for her and us. As much as we wanted to get home, we had made a little "hospital family" with those that worked so closely with us and we would miss them too...but we were ready. We were trained on how to put in her feeding tube and check placement and trained on the machines. We had all 10 (10!) of our follow up appts. set for us in the next month and were on our way!
It was a happy day to come home and get to spend time with all my kids under the same roof.
The 4 weeks in the NICU were so hard to try to split time, and they wanted sweet Ruby at home with them! I would spend all day at the hospital and be with Ruby and then come home at night and be with Landon, Olivia and Henry in the morning. Leaving each of them to go to the other was so hard and taxing.
We have the BEST neighbors that gave us a big welcome home! I totally cried.
