Cheated

Here is one of those "raw" posts I spoke about in a previous blog.

     Having a baby in the NICU can make one feel cheated. And when you give birth to a full term baby that was supposedly healthy, it's a whole world of feeling let down and betrayed. For an entire pregnancy we dreamed of going back to our hospital room and once newborn procedures are done, baby comes soon after. This is if you aren't lucky enough to be in a hospital where it's all done in the same room as mom.

     For those of us who want to nurse, there's those first few sessions of nursing that can be frustrating as you both start to find your groove but also a time of deep bonding. Visitors trickle in and out and so do nurses wanting to get vitals and to "ooh" and "ah" over your new precious baby. Some of us moms get excited about the cute baby clothes so baby wears his first outfits before even leaving the hospital. We find just the right one for the newborn photos that are way overpriced but they'll be put on the hospital website for people all over the world to see.

     But for some of us who give birth to a sick baby, most if not all of those things are stripped away from us. Instead there's the routine of going back and forth to the NICU just to see our baby. Some of us get to touch and hold them, but some can only look at them through the walls of an incubator. Some of us can see just a baby with any combination of IV, nasal canula, and EKG leads. For some though it is hard to even find the baby because of so many wires, tubes, and other devices. And with all that equipment there are no cute outfits. Some moms don't even get to hold their baby til days after delivery.

     On your walk to the NICU to see your baby, sometimes you have to walk past the nursery where all the healthy babies are. Or perhaps you see a nurse wheeling the bassinet to mom's room because it's time for the baby to eat or mom just wants some bonding time. Maybe you walk past a door that's open and see family getting to meet baby. It tears your heart into several pieces at each of these. Knowing that you had hoped for them. Waited for them. Expected them.

     And since mom isn't sick or in need of medical care, she's discharged before the baby. There is no feeling in the world like walking out of that hospital empty handed. To walk into a house that's ready for the baby and yet every place a baby can hang out is empty. The bassinet, the bouncer, maybe a crib or swing. Each one a reminder of the baby that isn't there. Going to the store you see people you know or a familiar employee. All asking about the baby. Each time you have to tell them that the baby is still in the hospital.

     For me, it has been almost 6 months since Isaiah was born. Still, some of those feelings of being cheated come back when I see pictures of moms who have the "normal" experience. I still get a bit teary eyed when I think about the ton of bricks that hit me when I was told my baby was very sick and had to be taken to the NICU instead of being brought back to me. I needed to be comforted and loved but I was so out of it from the pain medicine after my c-section that I couldn't turn my brain on enough to call someone.

     This is something I haven't really talked about with anyone. I feel guilty having these emotions. I still got to take a baby home, it could have been much worse, etc. but that doesn't change the fact that I felt that way. That I still do from time to time. That I still can't go look at babies in a hospital nursery. That was one of the hardest, most challenging weeks of my life. I was hit with so many heavy things at once. At times it felt like I was in rough waters and couldn't come up for air. The only time I felt any peace in my soul is when I was able to just sit and hold him. It was the only time I felt any sense of comfort in the situation. Like God hadn't forgotten me.

     Being a NICU mom isn't for the faint at heart. It will take every ounce of courage and strength you have. When they call it a roller coaster ride they aren't joking. But you get through it. And when you get to the other side and get to finally take that baby home, your joy is bigger than any other mom who got to take her baby home the "normal" way. I'm not one for locker room speeches but God really does give his toughest battles to his strongest soldiers and if you find yourself in the NICU that means He thinks pretty highly of you!

Honey, Make Me a Bottle

     As my last post said, we had a swallow test done. During the test he wasn't aspirating the Barium but he had a lot of penetrations, Penetration is when food or liquid goes into the trachea but stays above the vocal cords. Aspiration is when it gets past the vocal cords and goes into the lungs. Based on the high frequency of penetrations and near aspiration, they concluded that he is aspirating from time. They tried various consistencies of Barium --half nectar, nectar, and honey-- and the one that had very few penetrations was honey.

     After the test we went to a conference room and the speech pathologist worked out a recipe for me with how much rice cereal to add to each ounce of formula to get a honey consistency. Then we tried various nipples until we found one that worked for him. Dr. Brown's stage 3 (fast flow) was the magic nipple but his Mama is pretty crafty and I was able to make something similar with his regular Playtex Vent Air nipples.

     He's doing well with it but his intake is starting to go down. I started him on 6 oz bottles of this new consistency because with the rice, a 6 oz has the same amount of calories as the 8 oz bottles without cereal. I was really hoping that this ratio adjustment would work great and there would be no other tweaking needed. That would be too easy though! He will sometimes finish the 6 oz bottles but mostly he doesn't finish them. I either need to adjust the nipple size so it comes out faster for him or I'm going to have to increase the calorie per oz ratio. Right now he's at the 24 calorie per oz ratio that he's been on since he was in the NICU but we might have to go up.

     Another problem we might run into is constipation. That much rice can constipate babies so we might have to give him Miralax to help him go because I am NOT going to do a 3x weekly routine of suppositories if there's another avenue we can take. No pun intended but well, it kinda was!

     Hopefully this will solve the constant congestion and avoid another round aspiration pneumonia. At least til winter comes and nasty school germs are being brought into my house from Aaron and Eli. I might just stick a gallon jug of sanitizer outside the front door!

A Victory Amongst New Challenges

     This week Mr. Isaiah has seen his gastroenterologist (GI doctor), his cardiologist, a pediatrician, and a nutritionist. He also had his first visit yesterday from the new occupational therapist. And all that was all in just 2 days. It wasn't easy to juggle all 3 kiddos but we survived this feat. To say that I'm exhausted would be an understatement!

     Let me start by saying that the Dodson Specialty Clinic at Cook Children's is absolutely amazing! I was able to use complimentary valet parking. My kids are 5 months, 2½ years, and 6 years. You can imagine how crazy it is to get them all out of the car and corralled inside of a building. So to pull up to the front door, have someone help me unload my kids, and then park the car... I felt like royalty. Especially when this tired mom came back outside and had help getting them back into the car that was brought to me.  In the waiting areas there are several touch screens with kid-friendly video games as well as TV screens playing cartoons. All at their eye level. The best part was that there was more than one of each and therefore my older ones didn't fight over them. The nurse at the cardiologists gave my older 2 snacks, juice, coloring pages, and their own ziploc baggie of crayons to keep them entertained. They were no longer interested in my "survival kit" I packed, which means it's ready to go for next time. I am willing to bet money that they consulted with frazzled moms that have multiple kids and asked them what would make going to the doctor easier for them. There is no other way this amazing place could be so awesome!

     Back to Isaiah... he had an echocardiogram (ECG) which is a long word for heart ultrasound. The hole in his heart is starting to take on a cone-like shape meaning that the bottom of the hole is smaller than the top. The cardiologist's interpretation is that the hole is trying to close and there is tissue growing to start fusing the hole. Our original cardio... the amazing Dr. King... thought it was starting to close just by listening to him. I asked how often this happens and he told me that babies with Down Syndrome, their holes usually don't close on their own. He said it has happened but it is very rare. But he believes in God and believes in miracles. We were so blessed to be under his care for Isaiah's first few months. 
     
     The GI specialist thinks that the problems he is having with gas (this baby can out stink a room full of teenage boys), constipation, and a distended abdomen after eating is being caused by an allergy to the protein in milk. She has put him on Similac Alimentum (the comparable formula to Enfamil Nutramigen) to see if it helps. This special formula comes with the proteins already broken down. Smells like old mashed potatoes but he seems to like it okay. The nutritionist gave me instructions on how to mix it so that it still meets his needs for a higher calorie formula. Because he will be going through formula faster due to the extra powder in his bottles, we are able to get some through Cook Children's Home Health and it will be covered by his insurance since it's a medical necessity for him. 
     
     His new occupational therapist is very sweet. She has a lot of experience working with kids that have Down Syndrome and she is assigned to most of the kids in the program with it. She told me about some of the other therapies we should start with him soon. She watched him take a bottle and after some observations and asking me some questions, she is fairly certain he is aspirating formula with his bottles. That would definitely explain why he had pneumonia 2 weeks ago without being sick or having any other symptoms. He has now been referred to the rehab center at Cook Children's for a swallow test. They will put some Barium in his bottle and it will show them where the milk is going. They will thicken it with rice cereal until it no longer goes into his lungs. It is a serious issue but an easy adaptation to prevent it, we just need to work out the kinks before he gets sick again.  He will hopefully get in for that test next week. 

     The pediatrician said that he isn't very far behind on milestones and that he still seems to be on the high-functioning side for a baby with Down Syndrome. He got his DTaP vaccine yesterday as well. The doctor wasn't too keen on my decision to do his vaccines one at a time so that if there are issues we know which one caused it. And she definitely wasn't happy that I delayed his vaccinations either. Tried to guilt me into getting him on a "catch up" schedule but I use to be the queen of that game. Don't play my own games on me and expect me to win!

     The tummy troubles and aspirating food is definitely a bump in the road but I will take the task of having to adjust how and what he eats any day over worrying about his little heart!