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!
Monday, July 22, 2013
Wednesday, July 17, 2013
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!
Thursday, July 11, 2013
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!
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!
Friday, June 28, 2013
It's Not the Needle
Isaiah has pneumonia right now. Didn't even know he was sick. Usually it starts as a cold or something more simple. Nope. Not for my baby who had severe strep throat before even getting a little bit fussy. He doesn't really let me know when something bothers or hurts him.
He is a very laid back baby. Everyone tells me I was "so blessed" to have such an easy baby. And on the surface it is a blessing that he is easygoing. He likes everyone he meets. Doesn't get upset if someone new holds him. He's okay when Mama leaves the room. He whines some when he's tired. He does get mad when he's hungry. But he usually gives me some warning before he gets good and mad. Sleeps through the night most nights. Doesn't get too upset if he has to hang out in his Johnny Jump Up or bouncer while I tend to the house or older boys, or cooking, or phone calls. You know, the stuff that stay at home moms REALLY do instead of the stereotype of sitting on the couch watching daytime tv and sipping iced tea.
Back to my point. Yes, it is a big blessing that he is so easygoing and there has never been a time when he's inconsolable. I hit the jackpot and it is well deserved with my crazy boys who have me busy from the time they wake up til after they go to sleep. But there is a flip side to that. One that not many people see. So I will share it with you now.
I was told early on that children with Down Syndrome have a strong pain tolerance. In fact, I have to be very careful because he might really be hurt and not make a big fuss therefore I don't know he's hurt. I had my first experience with this pain tolerance when I took him in for a possible ear infection. When I touched his left ear, he frowned and would almost cry. After the exam, the doctor said that not only does he have a definite ear infection, he also has strep throat. I was floored. My 3 month old baby had strep throat and yet he was only eating about 4 oz less than normal? I attributed it to the ear infection. Had no clue he had a sore throat as well.
Now, if he doesn't fuss over a sore throat and barely winces at an ear infection then imagine how must something must hurt when he does cry in pain. I never knew how much a blood draw really hurts a baby until now. Even with the 2 times he's had to have a shot of Rocephin he didn't cry much. Rocephin is a powerful antibiotic but it hurts going in. But he didn't cry much. Having his blood drawn, however, he cries harder than I've ever heard him cry. And that is how I know that it hurts very badly for them to draw his blood.
I have recently became "that mom" who has to leave the room when their child has blood drawn. Because when he starts crying so hard he holds his breath a few seconds before inhaling and screaming again, I know that baby is in serious pain. And he hates being held down. So he's miserable and in pain. Before Isaiah, when my other babies cried at small pain and big pain, I didn't know which was which. But now I do and it absolutely breaks my heart for him. If I don't get down the hall before he starts crying then I start crying as well. If I had to be in the room with him I would absolutely lose my composure and have a breakdown. So I leave the room.
Needles...they don't bother me. It is because very few things make my baby cry. Having blood drawn makes him cry. And it hurts him really badly. After all he's been through, it kills me. My husband can handle it. He was in the room with him last Monday when they did labs. Even he had a few tears in his eyes when I got back. I can't though. And as guilty as I feel, somehow the nurses always understand. If someone from the lab has to come do it, they aren't as understanding. Nurses, medics, and some doctors - they get it though. And when they say, "It's okay, Mama. We understand. Trust me!" then it doesn't make me feel as much of a monster.
So leaving the room to avoid me becoming a patient as well -- it isn't about the needle at all. It is the easygoing baby who is about to let out a ginormous cry. A baby who didn't have a stronger pain tolerance wouldn't bother me as bad because I wouldn't know how much it hurts. But with Isaiah, I know it is the worst pain he's ever been through because it's the hardest he ever cries.
He is a very laid back baby. Everyone tells me I was "so blessed" to have such an easy baby. And on the surface it is a blessing that he is easygoing. He likes everyone he meets. Doesn't get upset if someone new holds him. He's okay when Mama leaves the room. He whines some when he's tired. He does get mad when he's hungry. But he usually gives me some warning before he gets good and mad. Sleeps through the night most nights. Doesn't get too upset if he has to hang out in his Johnny Jump Up or bouncer while I tend to the house or older boys, or cooking, or phone calls. You know, the stuff that stay at home moms REALLY do instead of the stereotype of sitting on the couch watching daytime tv and sipping iced tea.
Back to my point. Yes, it is a big blessing that he is so easygoing and there has never been a time when he's inconsolable. I hit the jackpot and it is well deserved with my crazy boys who have me busy from the time they wake up til after they go to sleep. But there is a flip side to that. One that not many people see. So I will share it with you now.
I was told early on that children with Down Syndrome have a strong pain tolerance. In fact, I have to be very careful because he might really be hurt and not make a big fuss therefore I don't know he's hurt. I had my first experience with this pain tolerance when I took him in for a possible ear infection. When I touched his left ear, he frowned and would almost cry. After the exam, the doctor said that not only does he have a definite ear infection, he also has strep throat. I was floored. My 3 month old baby had strep throat and yet he was only eating about 4 oz less than normal? I attributed it to the ear infection. Had no clue he had a sore throat as well.
Now, if he doesn't fuss over a sore throat and barely winces at an ear infection then imagine how must something must hurt when he does cry in pain. I never knew how much a blood draw really hurts a baby until now. Even with the 2 times he's had to have a shot of Rocephin he didn't cry much. Rocephin is a powerful antibiotic but it hurts going in. But he didn't cry much. Having his blood drawn, however, he cries harder than I've ever heard him cry. And that is how I know that it hurts very badly for them to draw his blood.
I have recently became "that mom" who has to leave the room when their child has blood drawn. Because when he starts crying so hard he holds his breath a few seconds before inhaling and screaming again, I know that baby is in serious pain. And he hates being held down. So he's miserable and in pain. Before Isaiah, when my other babies cried at small pain and big pain, I didn't know which was which. But now I do and it absolutely breaks my heart for him. If I don't get down the hall before he starts crying then I start crying as well. If I had to be in the room with him I would absolutely lose my composure and have a breakdown. So I leave the room.
Needles...they don't bother me. It is because very few things make my baby cry. Having blood drawn makes him cry. And it hurts him really badly. After all he's been through, it kills me. My husband can handle it. He was in the room with him last Monday when they did labs. Even he had a few tears in his eyes when I got back. I can't though. And as guilty as I feel, somehow the nurses always understand. If someone from the lab has to come do it, they aren't as understanding. Nurses, medics, and some doctors - they get it though. And when they say, "It's okay, Mama. We understand. Trust me!" then it doesn't make me feel as much of a monster.
So leaving the room to avoid me becoming a patient as well -- it isn't about the needle at all. It is the easygoing baby who is about to let out a ginormous cry. A baby who didn't have a stronger pain tolerance wouldn't bother me as bad because I wouldn't know how much it hurts. But with Isaiah, I know it is the worst pain he's ever been through because it's the hardest he ever cries.
Thursday, June 20, 2013
My Commitment to Readers & Followers
This blog is about all the things.... literally the ups and downs... that surround having a baby with special needs, specifically Down Syndrom. My promise to my readers & followers is to always be honest and to be raw. What does that mean? It means that I will risk being judged and scorned and tell the truth. One of the most helpful things for me was a relative who was raw with her own blog. She was honest about the emotions and stresses she faced when she was gifted a child with special needs. Her honesty might have gotten her a few snide remarks but for someone who faces similar challenges as a "rookie" in this game, her words were literary gold for me. So in my postings, judge if you will. I don't care. Because I know that my raw-ness will be literary gold for someone else.
There are those that will judge and that's fine. I'm not writing for peoples' approval or kudos. I'm writing so that when another mom has a doctor walk into the hospital room with a bombshell, she'll find my blog somehow and read my personal accounts of this lifestyle. She won't feel guilty about the emotions and thoughts going through her mind. Because let me tell you, had my cousin not made that blog post, I would have felt like the worst human in the world. It has been through other peoples' personal accounts that I have drawn strength, hope, courage, and sometimes a few laughs at things only moms that have been gifted a child with special needs would understand.
If you choose to judge or criticize keep in mind that you don't know someone's journey until you have tasted it yourself. And you will never know what kind of cards life is going to deal so one day you might be in a similar position. But I won't judge or criticize in return. Everyone is entitled to their own opinion. And you can't imagine what our world is like until you have experienced it.
There are those that will judge and that's fine. I'm not writing for peoples' approval or kudos. I'm writing so that when another mom has a doctor walk into the hospital room with a bombshell, she'll find my blog somehow and read my personal accounts of this lifestyle. She won't feel guilty about the emotions and thoughts going through her mind. Because let me tell you, had my cousin not made that blog post, I would have felt like the worst human in the world. It has been through other peoples' personal accounts that I have drawn strength, hope, courage, and sometimes a few laughs at things only moms that have been gifted a child with special needs would understand.
If you choose to judge or criticize keep in mind that you don't know someone's journey until you have tasted it yourself. And you will never know what kind of cards life is going to deal so one day you might be in a similar position. But I won't judge or criticize in return. Everyone is entitled to their own opinion. And you can't imagine what our world is like until you have experienced it.
Wednesday, May 29, 2013
Isaiah's Story
You see that 2nd line pop up on the pregnancy test. First there's the check, double check, and check again to make sure your eyes aren't playing tricks on you. Then you get excited and start to dream about the journey ahead. For some, you know immediately in your mind whether you want a boy or girl but deep down you think, "in the end it doesn't matter. As long as the baby is happy and healthy I'm excited!"
But what if that baby is born and he or she isn't healthy? Does that mean that you're no longer excited? I was once a person who used the phrase "... as long as the baby is happy and healthy..." but after having one that wasn't healthy, that phrase seems so conditional and subjective to me. As if you'll somehow love or want that baby less. And that is so far from the truth.
Isaiah was born on February 4, 2013 and when I first saw him something looked a little different in his facial features but I had also been pretty heavily drugged after the c-section with pain medicine plus benadryl for the itching. If you've ever had a c-section, you know that horrendous side effect that makes you want to claw your face off.
I was told that he was fine and I would see him again once I was in my room and he had all his newborn procedures. But instead of someone walking in my room with my baby boy, the nurse practitioner from the NICU came to tell me that my baby had some breathing difficulties and was taken to the NICU. Later the neonatologist came in and told me that my baby had a bacterial infection and was on oxygen as well as IV fluids. Oh, and we think he has Down Syndrome but we won't know until the test results come back from Mayo Clinic in a few days. Get some rest and you can see him in the morning.
As soon as my catheter came out and it was 9:00 am (no visitors...not even parents were allowed from 6-9 am and pm so the babies could rest, shift change could be done, and scary procedures could be done) I walked down to the NICU to be with him. Yes people. 13 hrs after a c-section I walked down to the NICU to see my baby.
Before I went my nurse tried to prepare me. She told me there would be tubes, wires, machines, beeps, and other babies with so much attached to them you can't see them. She said my baby was only on a nasal canula and IV but to not get scared when seeing the other babies. As much as she warned me, nothing prepares you for the first walk down the NICU hallway. It might not be YOUR baby on a ventilator but it IS a baby. And your "Mother's heart" bleeds for them. And in your state of unbalanced hormones, you being to cry before you even see your baby. And then I got to the pod where my baby was. And even with his nasal canula, IV, and leads on his chest... he was absolutely beautiful. I held him and rocked him for about 2½ hours before I started getting very tired again from the pain meds and my emotional night. The next time I saw him they had to add bilirubin lights to his course of treatment. Because he wasn't allowed to eat he couldn't poop out all the extra bilirubin and he had become jaundiced. 2 days later the pediatric cardiologist made his rounds. Nobody told me my baby had a heart problem. They had failed to tell me about his murmur and that they suspected a hole. So it came as a shock to me when I was told about these things.
Over the next couple of weeks he was able to start eating and did great. Eventually he was able to go to the step-down unit where he had his own private area behind a curtain and could wear clothes since he didn't need the bilirubin lights. All of the nurses were fantastic and by the end of the 2 weeks I was ready to take my baby home and face this new journey. I knew having a baby with special needs would be different from my other 2 babies but I wasn't prepared for HOW different it was going to be. In his first 4 months of life he has had 3 hospital admissions, strep throat, an ear infection, and now we're dealing with constipation & poor weight gain.
But even though there are challenges that I never imagined I would face, I also can't imagine life without him now. What I tell people is that I don't feel like it's a burden to have a child with special needs. Instead, I feel so honored and humbled that God trusts me with one of his babies that needs extra care and love. Those of you who are familiar with Down Syndrome know how loving and precious these children are. Isaiah loves to be hugged and cuddled. He gets really happy when he knows he has your undivided attention and might even give you a smile if you talk to him. He is a little behind on milestones but not by much. And each time he meets one, it is a very exciting accomplishment because he has to work a little harder to meet those milestones.
Suppose you were to ask me to look back and tell you if, before all this happened, this is something I wanted or imagined for my life. I would be completely honest and say, "No. It isn't what I wanted or imagined for my life". But in that honesty smile and then say, "Now that it has happened I wouldn't trade it for the world! This is my life now and I choose to embrace it and enjoy it. Through all its ups and downs."
But what if that baby is born and he or she isn't healthy? Does that mean that you're no longer excited? I was once a person who used the phrase "... as long as the baby is happy and healthy..." but after having one that wasn't healthy, that phrase seems so conditional and subjective to me. As if you'll somehow love or want that baby less. And that is so far from the truth.
Isaiah was born on February 4, 2013 and when I first saw him something looked a little different in his facial features but I had also been pretty heavily drugged after the c-section with pain medicine plus benadryl for the itching. If you've ever had a c-section, you know that horrendous side effect that makes you want to claw your face off.
I was told that he was fine and I would see him again once I was in my room and he had all his newborn procedures. But instead of someone walking in my room with my baby boy, the nurse practitioner from the NICU came to tell me that my baby had some breathing difficulties and was taken to the NICU. Later the neonatologist came in and told me that my baby had a bacterial infection and was on oxygen as well as IV fluids. Oh, and we think he has Down Syndrome but we won't know until the test results come back from Mayo Clinic in a few days. Get some rest and you can see him in the morning.
As soon as my catheter came out and it was 9:00 am (no visitors...not even parents were allowed from 6-9 am and pm so the babies could rest, shift change could be done, and scary procedures could be done) I walked down to the NICU to be with him. Yes people. 13 hrs after a c-section I walked down to the NICU to see my baby.
Before I went my nurse tried to prepare me. She told me there would be tubes, wires, machines, beeps, and other babies with so much attached to them you can't see them. She said my baby was only on a nasal canula and IV but to not get scared when seeing the other babies. As much as she warned me, nothing prepares you for the first walk down the NICU hallway. It might not be YOUR baby on a ventilator but it IS a baby. And your "Mother's heart" bleeds for them. And in your state of unbalanced hormones, you being to cry before you even see your baby. And then I got to the pod where my baby was. And even with his nasal canula, IV, and leads on his chest... he was absolutely beautiful. I held him and rocked him for about 2½ hours before I started getting very tired again from the pain meds and my emotional night. The next time I saw him they had to add bilirubin lights to his course of treatment. Because he wasn't allowed to eat he couldn't poop out all the extra bilirubin and he had become jaundiced. 2 days later the pediatric cardiologist made his rounds. Nobody told me my baby had a heart problem. They had failed to tell me about his murmur and that they suspected a hole. So it came as a shock to me when I was told about these things.
Over the next couple of weeks he was able to start eating and did great. Eventually he was able to go to the step-down unit where he had his own private area behind a curtain and could wear clothes since he didn't need the bilirubin lights. All of the nurses were fantastic and by the end of the 2 weeks I was ready to take my baby home and face this new journey. I knew having a baby with special needs would be different from my other 2 babies but I wasn't prepared for HOW different it was going to be. In his first 4 months of life he has had 3 hospital admissions, strep throat, an ear infection, and now we're dealing with constipation & poor weight gain.
But even though there are challenges that I never imagined I would face, I also can't imagine life without him now. What I tell people is that I don't feel like it's a burden to have a child with special needs. Instead, I feel so honored and humbled that God trusts me with one of his babies that needs extra care and love. Those of you who are familiar with Down Syndrome know how loving and precious these children are. Isaiah loves to be hugged and cuddled. He gets really happy when he knows he has your undivided attention and might even give you a smile if you talk to him. He is a little behind on milestones but not by much. And each time he meets one, it is a very exciting accomplishment because he has to work a little harder to meet those milestones.
Suppose you were to ask me to look back and tell you if, before all this happened, this is something I wanted or imagined for my life. I would be completely honest and say, "No. It isn't what I wanted or imagined for my life". But in that honesty smile and then say, "Now that it has happened I wouldn't trade it for the world! This is my life now and I choose to embrace it and enjoy it. Through all its ups and downs."
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