Gabriel’s First Birthday

Gabriel was born one year ago, today. It is unbelievably surreal. If you had told me that this year was going to go by like a blink, I would not have believed you, not even for a second… not after Gabe’s NICU stay.

Let’s go back one year…

My mom and I got up that morning around 6am, we didn’t sleep much later than that in the hospital. We were going on five days of being admitted (Gabriel suffered from intra-uterine growth restriction); not long enough to want to scratch my eyeballs out, but long enough that we were planning on ordering dinner out for the first time. That was the night that former Mayor Giuliani’s Sept. 11th account was to be aired on TV. Aaaand that was going to be our evening.

After our morning stroll through the hospital and our less than spectacular breakfast, my perinatologist came to do my daily ultrasound. She took her usual 30 minute scan saying all of the reassuring things, “this looks great, we’re good here, this is what we expect to see, let me check this one last thing…” …and the rest is history (and written previously in this blog). My life has never been the same. Not one single aspect of my life is the same, and I wouldn’t change a thing.

At one year old, Gabriel is not walking. He is not crawling. He is not sitting up. He is not eating more than a few ounces by mouth. He is not teething. He is not talking. He is not pushing up with his arms. He is not rolling over consistently.

I think this is self explanatory, but for the sake of clear communication, yes – these milestones have not been met and yes when put together in a neat little paragraph I feel the weight of those unmet “expectations”. And yet…

At one year old, Gabriel is here to celebrate. He can eat a little by mouth. He is off of oxygen. He has not been sick once since the NICU. He is babbling. He is playing with toys. He reaches for my hair, glasses, lips, nose, anything. He holds his head up well. He is growing like a weed. He is the best cuddler. He has a million dollar smile and a laugh that breaks bonds. He is more loving than I could ever ask for. He has a thousand faces. He brings smiles to strangers. He softens hearts. He brings family closer. He has taught me more than I could ever put down on paper.

When I first found out that Gabriel had Down syndrome, I asked God, “Why me? What did I do to deserve this?” And now, as I write this entry and look at my sleeping baby, in tears I’m asking God, “Why me? What did I do to deserve him?” I don’t understand why God chose me to be Gabriel’s mommy, but he is the greatest gift that I never thought to ask for.

I love you, Gabriel, more than you will ever know. Happy first birthday baby!!

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Five Months

Gabriel is five months old! He’s been out of the NICU now for almost nine weeks. He’s about 11 lbs 7 oz and 21.25 inches long…still my tiny guy! When Gabe feels like it and is attentive, he takes down a little milk from the nipple of a bottle that is backed by a syringe filled with milk so that the amount he receives is controlled, maybe a third of an ounce every few days. We’re working on that part! For now though, he’s still on 100% tube feeds. He most likely won’t be able to start solid foods at six months old, he doesn’t quite have the coordination or desire enough for that yet, but that’s why he has the Mic-key button. He’ll have the Mic-key button for as long as he needs it…until he can take down adequate nutrition by mouth. He sees two therapists a total of four to six times a month to work on improving head control and oral feeds.

Gabe is still on a small amount of oxygen, but he doesn’t really struggle without it. One night I plugged him into his oxygen tank upstairs but somehow forgot to turn it on. 12 hours later I realized my mistake, but before I turned it back on I checked his oxygen saturation with his home-monitor. After 12 hours of no additional oxygen, he was satting 97-98%! 92-97% is an acceptable range and he was at the high end of that! Even though he would probably be fine without the oxygen, he’ll most likely stay on it through RSV/cold/flu season, just in case.

Gabriel is still on eight medications. If each time I give him medicine is counted as one med, then he gets a total of 15 throughout the day. Five of those are breathing treatments that he gets three times a day. He’s still on continuous feeds for 18 hours of the 24 hours with two three-hour breaks. His Mic-key button is cleaned during those breaks, as are the feeding bag and the tube that connects the bag to the button. As long as he’s not congested, I try to get him to take half an ounce of milk twice a day…. Gabriel’s care keeps us pretty occupied throughout the day. I’m not able to work, nor do I want to. I never understood why women would choose to stay at home with their children instead of having a career. I get it now! Oh man, I get it…and that’s exactly what I want.

We’re switching pediatricians…sore subject…because Gabriel is three lbs heavier than when he left the NICU and yet he’s on the exact same amount of milk with the same amount of calories and the same dosage of medication….hence why we’re seeing a new pedi.

ECI (early childhood intervention) came to evaluate Gabriel because he qualifies for two reasons: Down syndrome and preemie. Since he was born 10 weeks early, developmentally he should be at the stage of a three month old, not a five month old. His first two full months of life should have been spent growing inside of me, so those months are not considered when looking at his development. That being said, Gabriel was evaluated to see where he stood developmentally. The three areas that he’s behind in are head control, rolling over, and in oral feeds. The one area that he’s ahead of is social/emotional! I have an emotionally and socially strong baby, makes me very proud. Gabe smiles, talks quite a bit (and is adding “cooh”s), he’s ticklish, his neck muscles are getting stronger, he’s interested in looking at his toys, and he loves cuddling…and so does his momma!!  He’s about to start batting at his toys and he’s almost ready to start giggling! If Gabriel’s smile already makes all the hardships and worries for a day completely disappear, then I can’t imagine what his laugh will bring ❤

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NICU Discharge

Obviously I haven’t posted anything since Gabriel’s recovery from his last surgery. He recovered pretty quickly and home equipment was ordered for his feeding tube and for oxygen. After 13 weeks and 2 days, he was discharged on December 13th, but not before he had one last episode…

Gabe was discharged on a Monday morning. His doctor wanted me to “room-in” (since he was going home with equipment, I was encouraged to stay the night with him in a room so that I could operate all of his equipment for 24 hrs and yet still have access to a nurse) on Saturday night so that I could get my last good night of sleep on Sunday before I took him home on Monday. So, that was the plan.

Saturday morning rolled around and it was time for me to change Gabe’s g-tube dressing…the g-tube is literally a tube that goes right into the stomach from the abdominal wall and is held underneath the skin by a small balloon; it looks very primitive. The tube is then taped down over a roll of gauze to prevent it from pulling out and to keep the hole perfectly round in preparation of having a Mic-key button put in its place. Changing the dressing of the g-tube was a stressful thing for me already because to me, that’s the most opportune time for the tube to accidentally be pulled out. So I’m changing this tube, I’m frustrated because the tape is sticking, I’m sweating because I’m frustrated, and I’m on the verge of tears…so much so that the nurse told me to calm down. I stepped away to pump and to collect myself. In that time, I realized that this was all displaced something. Frustration. Anger. Fear. Something. Now that Gabriel was about to go home, I was terrified that I wouldn’t be able to provide for him like the NICU had done, that I would forget to give him his meds or give him the wrong dose, that his tube would come out… that I would fail. I felt like I was anticipating something horrible.

Well, the previous week Gabriel’s doctor and I discussed having Gabe circumcised before he was discharged. His doctor was hesitant since Gabriel was an “older” baby and the foreskin was thicker, which led to an increased risk of bleeding, but he agreed to do the circ. He ended up doing the circ on Saturday afternoon (remember, I’m rooming-in that night). I’ve never seen a circ when it’s first done, so I didn’t know what to expect, especially since the doctor was using a plastibel to hold the skin back. It looked very meaty and bloody to me, but his doctor came back after two hours to check on the bleeding and he said it was fine.

At this point, it was time for us to move into a private room for our rooming-in. About 20 minutes into rooming-in, I went to change Gabriel’s diaper…and it was full of blood. I called the nurse and after she looked at it, she got the night doctor…who then called a urologist because they couldn’t get the bleeding to stop. I almost passed out…blood doesn’t bother me, but the thought of Gabriel having to stay longer in the NICU, the thought that he may need another blood transfusion, the thought that something may be very wrong…just too much.

The urologist came late that night. Since the nurses were applying pressure to stop the bleeding, the plastibel was shifted out of place and had to be taken off. When the circ was first done, Gabriel received a shot of lidocaine to numb the area so he wouldn’t feel anything…but this time the urologist couldn’t use any numbing agent. He had to take the plastibel off and stitch the skin down to hold it back…without any pain relief. This procedure was done in a closed room across the hall from Gabe’s patient room…he screamed the whole time. Afterward they wheeled him back in his bed and he just laid there and looked at me, eyes red and glossy. It was horrible. Needless to say, they wanted to monitor him overnight to make sure he hadn’t lost too much blood so I didn’t room-in. I went home. Again. Without my baby.

Gabriel did not end up needing a transfusion and I was able to room-in with him on Sunday night. It was a smooth night…with hardly any sleep! It was the first time that I had eaten in the same room as Gabriel. The first time I held him without being attached to a monitor. The first time I slept in the same room as him. It was beautiful.

And that was it. Monday morning I signed papers, went over his discharge summary with his primary nurse, and WE went home. We went home. After 93 days, Gabriel came home with me.first day at home

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It’s probably obvious by now that I write when I need to work through emotions of the present situation. Well, I don’t need to this time. I can’t say that I’m not on my toes in preparation of something unforeseen, but I think Gabriel has finally been given a restful season.

Surgery this past Tuesday went well. Gabriel had the nissen fundoplication and gastrostomy tube placed. After the surgery was over, the surgeon didn’t come out to see me. In fact, I was left in the waiting room of the OR while my mom went back up to the NICU to see if Gabriel had been wheeled back to his room. I got a call two minutes later saying, “You need to come up here, the surgeon is waiting.” I met my mom in the hallway of the NICU and walked towards Gabriel’s room. I saw the surgeon talking with the doctor and two other people who are since a blur. I heard him say “liver”. Oh my God. The surgeon said the g tube and nissen went well, but he had to remove the piece of pancreatic tissue (remember, it’s rare but “shouldn’t ever cause a problem”?) on his stomach because it was in the way of the g tube. That part was okay…then he said Gabriel’s “liver looked really dark. It was soft, but dark, so I took a sample to send off for a biopsy.” If that wasn’t enough, he proceeded to tell me that there was a cloudy fluid in Gabriel’s abdomen, just floating around surrounding his organs. He took a sample of that too and sent it off for a cell count and culture.

Gabriel’s doctor explained to me that the fluid is called an ascites and was probably there because of the damage to his liver from the IV nutrition. If you’ve read further back into my blog, Gabe’s liver was really sick, but after a week’s scare the bilirubin and liver enzymes were on a downward trend. That night after surgery I looked up “ascites”…80% of cases of ascites occur because of a severely diseased liver or liver failure…

I’m having difficulty describing what hearing about this was like. I just couldn’t get beyond the possibility of liver failure. I sobbed and sobbed and looked at Gabriel and wondered: is this the beginning of the end? Am I gonna lose my baby? I cried for two days.

On Thursday the pathology report of the ascites came back with nothing remarkable, they knew it was there from his liver. Then the biopsy report: mild changes to his liver – his liver is making blood cells (pretty typical with Trisomy 21), the liver ducts are inflamed but not abnormal, and mild fibrosis BUT no bridging (fibrosis: scarring tissue in the liver; bridging: connective scarring tissue associated with end-stage liver disease). Basically, as long as Gabriel’s liver enzymes continue to drop, he’ll be fine. His doctors don’t think he’ll have any problems with his liver as he gets older, but we will need to see a specialist once he’s discharged.

As for Gabriel’s recovery, his ventilator settings had to be turned up the first two days, but he’s done really well since then! He was on the ventilator for five days and then extubated to high flow nasal cannula at 4 L! That’s what he was on before surgery. Yesterday his flow was turned down to 3 L…and he hasn’t needed oxygen! He’s on 21% oxygen (which is what you and I breath). Gabriel is back in his big boy crib, his g tube site looks great, the nissen incision hasn’t shown any problems, and he’s bored! That’s a very good sign: he’s bored and wants to come home. The nurses are telling me we may be home in the next two weeks, but the doctor is alluding to it taking longer than I think (probably so that I don’t get my hopes up). His body will tell us when he’s able to come home…and he’s heading there fast!!

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Gabriel’s breathing has taken a beating this week. His lungs are becoming more wet, he’s requiring more oxygen, more support, his whole body is working hard, and he’s burning a lot of calories just to breath.

On Tuesday, the doctor told me that she “thinks we’re barreling towards a G-tube”. A G-tube (gastrostomy tube) is a feeding tube that is placed in the stomach for babies who can’t (for whatever reason) feed by mouth. It isn’t safe to feed Gabriel by mouth because of his respiratory status. He is refluxing (almost like heart burn) and aspirating (getting into his lungs). So to help him stop refluxing and aspirating there is another procedure called a nissen fundoplication that basically pulls the upper part of the stomach up and wraps it around the bottom of the esophagus to strengthen that muscle so Gabriel won’t be able to reflux, thus not be able to aspirate (which will help his lungs).

Wednesday came around and his doctor consulted with the surgeon who did both his duodenal atresia repair and his Broviac line surgeries and he scheduled surgery for tomorrow. Gabriel will have his third surgery: a G-tube and a nissen. The hope is that once he heals from these surgeries then all we need to work on is his respiratory system. His doctor is convinced that he’ll need to be on oxygen to come home. I’m ok with that. It’s better for Gabriel to be home (even if it’s with a feeding tube and oxygen) than to be in the NICU. I’m worried though that if the nissen doesn’t help his lungs, then it’s something else that has been making his lungs wet…his heart.

Surgery itself should be a breeze, but it’s the recovery and Gabe’s lungs that have me holding my breath. He “shouldn’t” react the same way he did with his duodenal atresia repair, but then again he shouldn’t have reacted as bad as he did that time either. As far as his lungs go, he has to be intubated and put on a ventilator for surgery and then work himself down from the vent to CPAP to the nigh flow nasal cannula, which is what he’s on now (4 L, about 28% oxygen). Gabriel was put on three nebulized breathing medications on maximum doses this week because of how sick his lungs are. The only “big gun” the doctor is saving for post-surgery is a round of steroids. He can’t come home on any more than .3 L flow on the nasal cannula… he’s on 4 L right now. If the treatments and steroids don’t help him get down far enough on the cannula to go home, then we have to talk about a tracheostomy. At this point, if Gabriel needs a trach to come home, then he needs a trach to come home. I’m praying this doesn’t go that far and that after this surgery his lungs will heal and he can come home by Christmas. Selfish or not, that’s what I want. I want to spend Christmas with my baby at home…but I’d rather spend it with him in the NICU than not be able to spend it with him at all.

I had “stressed” written in Sharpie on my face earlier this week. Now, I’m feeling ok. I gave Gabriel a slow tub bath and cuddled with him all day. I just want this surgery to be over with. Let’s get beyond the first 48 hours and then we’ll see how things are going…

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Gabriel’s stomach content is suctioned out and analyzed before he receives every feed. It’s a simple process to look at what and how his body is doing digestively as well as help remove air from his tummy. Last night before his 5pm feed, the day nurse checked his residuals and there was 1 mL of digested milk left that had a green tint. The nurse said, “at least it’s not bright green!” For his next feed at 8pm, the night nurse checked his residuals and he had 11 mL…neon green. I had a feeling since yesterday morning that something just wasn’t right. Gabe had been taken out from under the oxyhood and placed back on the nasal cannula, but this time he required a higher amount of air flow support (2 L) and more oxygen than when he was first put under the oxyhood. I have seen too many babies get sick with no warning… deathly sick. This was a very bad sign.

The night doctor was called in to analyze Gabriel. He was puzzled. He called off his 8pm feeding and ordered a xray, blood culture, complete blood count, and a test to check a level in his blood that indicates an infection (CRP). The x-ray looked ok, but Gabriel hasn’t had an abdominal x-ray since the end of October, so the doctor didn’t have anything to compare it to. When it came time to draw his blood, I had to step out and get myself together. I wailed. I just can’t fathom more, I don’t think I can handle more. And he shouldn’t have to suffer anymore!! I don’t know how Gabriel’s body would handle being sick again… not well without divine intervention.

It ended up that his blood count was fine and his blood isn’t indicating an infection, but we’re still waiting on the blood culture. So with no answers, he resumed feeds at 11pm. Gabriel’s day doctor isn’t concerned in the least bit and attributes his body’s signs as being a delayed reaction to his stomach surgery and to his recovering liver. However, the week leading up to Gabriel getting pneumonia almost 2 months ago his body was giving signs and the doctors not only could not decipher the signs, but they were attributing the signs to all sorts of things.

By the end of today Gabriel is requiring a little more oxygen and is intermittently breathing very fast. I’m on pins and needles. My stomach hasn’t ceased to be in knots since last night. Something is not right. I can feel it. Please prove me wrong, God.

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Term Party

Today is Gabriel’s due date. He is officially a term baby! He made a sound today that I haven’t heard from him before and he was more active and engaged than he has been. He is such a curious boy and he loves going through two or three or four diapers during diaper changing time every three hours. He was really wanting to play today, but…

Gabriel has been congested this last week and some of the nurses have been aggressive in suctioning out his nose too deeply and forcefully. Since he also had the nasal cannula and feeding tube in his nose, his nostrils became inflamed. Two nights ago when I left, he was on 30% oxygen and by yesterday morning, he was up to 45% and his whole body was working to breath. This terrified me because I knew that if he couldn’t breath through his nose, he would have to be intubated and put on the vent. And for what? Because a couple of nurses decided to shove the neosucker down his nose every couple of hours? I was really worried. The doctor was brought in and she ended up taking the feeding tube out and pulling the nasal cannula off. Immediately he started satting better (the oxygen saturation in his body improved). He was put underneath an oxyhood…an extremely humidified (with added oxygen) dome. He’s still under the oxyhood. It’s so sad to see him, or not see him actually, under the hood because it covers him from his shoulders to his head and it’s so humid that it’s completely fogged over. I can’t see him. Not only can I not see him, but I can’t hold him either. He was awake more today than he has ever been and he got to stare into a fog filled dome. I felt awful this morning. I ended up writing his name on a piece of paper in sharpie and drawing squares, circles, hearts, and triangles on the ends of the letters. Our nurse laminated the paper so I could stick it to the inside of the dome. The doctor is hopeful that tomorrow he can come out from under the hood and not need any additional breathing aid, no machines or added oxygen.

I’m prayerful that my little Buzz Lightyear doesn’t need to keep his helmet on any longer. He’ll love this picture as he gets older: Gabriel the Space Ranger!

Happy term birthday my silly boy. I wish,with everything in me, that I could give you a kiss right now. I’ve never been more proud of anyone in my whole life. I’ve never loved anyone as much as I love you. I will do anything for you. I’ll always be here. You are my hero baby. -Mommy

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