My Champ

Gabriel’s bilirubin level has almost dropped in HALF! This means that his liver is working just fine now; no need for a specialist or any testing. Praise God.

Yesterday brought lots of good signs of progress. His Broviac line was taken out… meaning the doctors feel confident in his health and healing. He got to try bottle feeding for the first time in the morning and he took 3 mL! He started with a slow flow nipple and then a regular nipple and he did fine with both! No aversion, no fright; he did great. His swallowing and breathing in coordination with sucking is not there yet, but that comes with time and practice. Considering Gabriel’s circumstances (being intubated three times, having at least one tube in his mouth for 8 weeks, not feeding by mouth for 9 weeks, and having Down syndrome and the accompanying low muscle tone) he has done phenomenally. Speaking of low muscle tone, I laid Gabriel on my chest today for some cuddle time (not thinking that he was old enough for tummy time to be beneficial) and he picked his head up. My Gabriel picked his head up. This may seem like a typical early-on milestone, but this is HUGE for him! There were a couple of times in his 9 weeks when I thought he wouldn’t live to accomplish this milestone, and now he’s picking up his head.

Today was Gabriel’s third neurosonogram. It was to clarify the two earlier “questionable” scans; a grade 3 brain bleed and PVL (oxygen deprived tissue that causes holes in the brain). I’ve already dealt with the emotions related to Gabe having potential brain damage… but today, the doctor said there is no brain damage. She doesn’t think there ever was a bleed and there aren’t any holes in his brain tissue. In fact, she took “Grade 3 IVH and PVL” off of his diagnosis. Whether Gabriel had brain damage or not, I feel blessed. God has blessed me with the most perfect baby. He’s my champ.

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Yellow Submarine

It’s time to worry, potentially. Gabriel’s direct bilirubin level (the reason why his liver is so sick) rose again, substantially. In fact, the doctor said he had to do a double take not only because the level rose so much, but also because there is no “reason” that it should be rising. Gabriel’s doctor has been working this week to tweak his nutrition in hope that it will help his liver clear out. One of the important functions of the liver is to help the body digest food and grow. Gabriel hasn’t grown in a few weeks…not with real weight and not in length. His body isn’t absorbing the fat from the milk, so now they’re adding “partially digested formula”. Tomorrow morning the doctor ordered another check of Gabe’s bilirubin…just for “curiosity” (the test is typically once a week). If the level continues to rise (and keep rising till this coming monday) then next week will bring about “tests”. If there is an actual problem with his liver, it’s an anatomical problem. According to the doctor, it would need to be fixed by surgery. I asked what that would entail and his response was “it’s very involved…we don’t wanna talk about it unless it’s the reality.” Just when I thought everything was starting to go smoothly… this could be detrimental. Gabriel needs prayers, this isn’t looking good.

Forewarning, I’m feeling jumbled and the following is a reflection of that…

Gabriel’s high flow nasal cannula has been turned down from 6 L to 4 L! This is great progress for a little boy who’s been on a ventilator for a month. He received his three immunizations today because, after all, he is two months old! He has his sixth roommate now. I believe that Gabriel’s roommates have all been paired with us for a reason…but this roommate’s mom only speaks spanish…ummm, I’m not seeing the reason yet! His neighbor, Karli, is very sick. She has NEC. Please pray for her, her twin sister, and her parents. Father, show them mercy. Speaking of, six weeks ago or so I wrote a blog titled NICU Babies and wrote about a little girl named Anne with spina bifida. I saw her grandmother today. Anne died four days after leaving the hospital. A baby in the NICU died yesterday. Please don’t take a pregnancy for granted. I’m scarred from what I’ve been through and what I’ve seen families go through…I’m in awe that any pregnancy can be “normal”.

I’m having a hard time seeing the end of this tunnel…can you tell?

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Two Months

Nine days after being switched to CPAP, Gabriel has made it to the high flow nasal cannula! This means that his lungs are continuing to improve, he has less air blowing into his nose, he doesn’t have to wear awful head gear, AND mommy gets to pick him up any time she wants!! Today was the first time that I’ve gotten to hold him twice in one day! As excited as I am, Gabriel has a blood gas in the morning that will determine if high flow is enough for him, or if he needs to be on CPAP longer.

This past week has been about slow progress and the discussion of Gabe’s remaining NICU stay. Currently, the biggest concerns for the doctor (and areas of concentration for my little guy) are his liver, lungs, and oral development. Gabriel’s liver is “really sick”. He had to be on IV nutrition for his first 7 weeks before receiving any breast milk (due to duodenal atresia) and it has caused his liver to be very sick… I’ll know tomorrow if his liver is starting to make a turn around, or if they are going to get a liver specialist involved because of the damage. The “sick” is from high levels of direct bilirubin which causes him to be jaundice, but it’s not the kind that can be cured by phototherapy. So, he looks very yellow: eyes, skin, palms, gums, and roof of his mouth. He’s my little yellow submarine 🙂 We’ve been listening to that song by the Beatles in his room a lot lately from the Rockabye Baby Beatles CD. The doctor isn’t overly concerned with his liver because she thinks she knows why it’s “sick”; if she’s wrong, then it’s time to worry.

One of Gabriel’s biggest strengths when he was born was respiratory, but then he got sick with pneumonia. Ever since then (and after surgery) he’s had a very hard time weaning off of the breathing machines. Its been a slow process.

The last concern is Gabriel’s oral development. He needs to learn how to feed: suck, swallow, and breath. This can be a very big stumbling block for some babies in the NICU for various reasons. For Gabe, he has always had one or two tubes in his mouth, he’s been intubated three times, and he’s never been able to feed until the past 10 days or so (through a tube though). On top of the trauma he has had to his mouth and throat, he has Trisomy 21. According to the doctor, most babies with T21 are poor feeders.

Then there came the discussion of Gabriel’s NICU stay. The doctor is giving him a 50/50 chance at either feeding well and lungs healing  and going home OR needing a feeding tube (G tube) surgically placed and require a breathing machine and oxygen to go home. It all depends on how his lungs heal and how well he begins to bottle feed. However, as a nurse pointed out, for the doctor to even bring up the G tube, it means she’s leaning in that direction. The point of the feeding tube is this: the best place for a baby to be is home, so if Gabriel is stable except that he needs a little aid to adequately breath and he needs a longer amount of time to learn how to feed, then he’ll be sent home with the necessary medical “things” in place. On one hand, the thought of another surgery makes me very uneasy, but on the other hand, I’m okay with whatever it is that he needs to come home. The best place for him to be is his home with mommy, not the hospital.

There are no discussions as to the length of time remaining at the hospital, just what it could look like. I’m still really hopeful that he’ll be home by Christmas, but “it’s gonna be a long road” seems to be the motto.

my yellow submarine in his pumpkin hat

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Halloween

I bought Gabriel a Halloween shirt a few weeks ago and have been praying that he’d be able to wear it (he’d have to be off the ventilator). Gabriel was officially extubated two days ago! He’s on a less severe breathing machine, CPAP. He cried for several hours after he was put on CPAP because it’s strapped to his head, covers his ears, and blows so much air into his nostrils that if he opens his mouth, air blows out. He’s finally adjusted to it. His body hasn’t progressed yet, since being on CPAP, but he isn’t getting worse…so that’s ok with me! I’ve heard Gabriel’s cry for the first time in almost a month, his hoarse little cry. I never thought I’d be so happy to hear him cry.

My Biel is up to 6 lb 2 oz, 37 weeks gestational age, and 7 weeks old. He’s done remarkably well with his feedings! He is having consistent dirty diapers, no spit up, and is up to 1 oz (30 mL) of breast milk through his feeding tube every 3 hours! Gabriel’s doctor gave me permission to hold him starting yesterday… after 17 days and 1.5 lb later. Today he buried himself further into my arms; this is what motherhood is all about.

This week I’ve been able to see three of the NICU moms that I got close to who have all been able to go home. These women have shared in my tears and have shared in my joy. phenomenally strong women, families, and babies. I’m so excited to have play dates in the near future!!

I can’t say that I’m beyond my hesitancy to be fully enthralled in the happy moments and progress. In actuality, my “hesitancy” is coming out in frustration and anger. Gabriel has cried more than ever on the CPAP and the helplessness is killing me!! There are only so many things that I’m allowed to do that would bring comfort to him and when those things don’t work, I can’t just pick him up or rock him or take him on a walk or for a drive in the car to calm him down – and it’s so frustrating. I’m helpless to my own baby… and we both cry. I’m trying to uproot the displaced anger; however, when a nurse feeds my baby 40 minutes LATE, she may or may not be getting deserved anger (I haven’t decided yet). For now, I’m just trying to coast, not have expectations, and fully enjoy holding Gabriel again.

 

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14 Days Out

This post has been a few days in the making. I’ve been hesitant to write anything… anything positive at least. I’m still forgetting to breathe half the time. Today, the doctor said he thinks Gabriel is turning the corner from his surgery and is on an upward trend.

One nurse in particular has always been brutally honest with me about Gabriel’s health and progress. Days before he started feeding (remember, feeding tube in his mouth that goes down to his stomach), she told me that babies who haven’t eaten before will spit up, which causes the doctors to stop feeds, then start feeds, then stop feeds, then start feeds. She said this start and stop could go on for weeks until the baby’s stomach and intestinal track “wake up” and can tolerate the feeds. Well, Gabriel had to stop the feeds after two days, but they restarted after 24 hours. He was receiving about a drop of breast milk over the course of an hour for 24 hours. Once they restarted the feeds, he was receiving 2 mL every 6 hours. Yesterday he was up to 3 mL every 4 hours, and today he is up to 5 mL every 4 hours. Gabriel hasn’t spit up any of it! His body is actually digesting the milk! It’s incredible that his stomach contents are suctioned out and observed for progress before re-feeding him the residuals and then giving him the breast milk. Gabriel had his first breast milk poop today! He had passed the meconium so we knew his bowels were working, but today our prayers were answered for poops 🙂

Gabriel is still on the ventilator, but the settings keep improving. By the end of this week, he should be off the vent and either onto the CPAP or high flow nasal cannula. My anxiety over Gabriel extubating himself (or being extubated because of human error) is debilitating. That kind of trauma would set him back. Speaking of trauma, he had his second eye exam today. I stayed in the room so I could see what the ophthalmologist was doing and so I could see Gabe’s reaction. It was bad. Very bad. The nurse said she’s never seen a baby “dislike” the eye exam as much as him. As soon as it was over, and it didn’t last long, I was able to comfort him with my voice and touch. That’s a very uplifting and encouraging thing to me… plus, his eyes look great so far.

Now for the discouraging part.

I haven’t held Gabriel since his surgery two weeks ago. I knew it was better for him to just rest and not be held. I thought today would be the day, so I asked. His doctor said no. It’s crushing to hear, “No, you cannot hold your baby”. Even though Gabriel has made tremendous strides, he still isn’t stable enough to be held. “Maybe in a few days.” My logic begrudgingly agrees that he needs a few more days to see if he is tolerating the feeds and to get him off of the ventilator and have the breathing tube taken out because he doesn’t need another bump in the road… but my whole being yearns to hold and comfort him.

Gabriel is really doing better, but it’s me who’s having the hard time. I still feel like I’m twiddling my thumbs before something else happens… and yet, he’s fought his way to this point and he’s still fighting. Gabriel has been trying to pull his tubes out every time his blanket opens, hence the mittens 🙂

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Code Blue

I could’ve posted an entry last night about how well Gabriel was doing, but I didn’t. I try to revel in the happy moments, the muscle reflexes that look like smiles, the eye contact, the kisses I can give, the vent settings lowering, the oxygen lowering, the feedings, the progress… but I’m so scared.

Gabriel was doing better yesterday. They transferred him from the high frequency ventilator to the conventional ventilator and he did so well with the breast milk that his feedings were increased to 2 mL per hour continuously. Yesterday was a really good day, it was. Even in the good day though, Gabriel’s diapers weren’t very wet. Maybe I was just too tired last night to post a positive blog, or it was fear that tonight I’d be posting another difficult blog. As one of the nurses explained to me tonight, life in the NICU (especially for preemies) is usually one step forward and two steps backwards for a while… which is definitely not what anyone wants to hear.

This morning the doctor stopped Gabriel’s feedings (when I say “feedings”, I mean that he receives breast milk through his feeding tube) because his stomach wasn’t able to process it as quickly as he was receiving it. Then, his CBC (complete blood count) that is checked three times a week came back showing young infection fighting cells… meaning that Gabriel may have an infection. He has been started on antibiotics again and the nurse took blood from his arterial line, his new Broviac line, a urine sample, and a sample from the breathing tube that goes down to his lungs. Of course, that’s not enough for one day.

Pride and ego, according to the professional opinions of my mom and I, are the two leading factors in causing human error. Gabriel’s nurse today went to give him a once daily medication through his Broviac line and said “I’ll just let the IV nutrition carry this down the line”. This medication is NOT compatible with any other fluid, in fact, it can crystallize upon contact. The label reads, “not compatible”. Had I not been paying attention, this nurse could have caused a lot of damage! When I told her that it’s not compatible, her response was, “it should be!” Ahhhh, I was mad! What if I’m not there one day or if I step out of his room for thirty seconds??  If that wasn’t enough, an hour later, because this nurse pulled Gabriel’s feeding tube out of his mouth (which wasn’t supposed to be taken out) he started choking and coughed out his breathing tube!! This is a huge deal because it can cause damage to his trachea and then he has to be intubated again! When the tube came out, the nurse tried to push it back in and when she realized that it was fully out, she froze! I had to call for another nurse and then four nurses and the doctor came running! He was a code blue. I watched Gabriel go from being deep red and thrashing around to being pale, turning blue, and going completely limp because his heart rate and oxygen saturation rates were plummeting. I will never be able to get rid of that picture of him. On top of all of this, the nurse told the doctor that Gabriel pulled out his feeding tube and that’s why he extubated himself. She lied and blamed my son. Ego… and because of her ego, Gabriel is coughing up blood now.

My resolve in this traumatizing day was to make sure that she’ll never be our nurse again, and to be at the hospital for the entire day shift of a nurse that I don’t know, at least until Gabriel is doing better. I feel like I can’t trust anyone to care for him without me being there to check their every move. I realize that I’ve said this quite a bit lately, but I’m trying to forget this code blue scare, trying to block it out. Ultimately though, Gabriel is still here. Three babies have died this week in the NICU, and Gabriel was not one of them. Praise you, God, for my blessing and give strength to those families.

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Human Error

Because of human error, Gabriel’s PICC line had to be taken out two nights ago. The PICC line is a central catheter that is inserted like an IV but the catheter is woven through the vein and stops next to the heart. Typically it is used for several weeks up to a few months. Since Gabriel still has to rely on IV nutrition, he has to have a central catheter; IV’s are not used in this case because they don’t last long and the IV nutrition is harsh on peripheral veins. Case in point, while Gabriel was having a central catheter placed yesterday, his IV nutrition was passing through an IV in his right hand and the vein blew. Now he has a chemical burn on his arm, just like the one on his scalp.

Central catheters are big deals as far as infection. In fact, I had to sign two consent forms that ended with “possibility of death” in regards to my baby. Needless to say, I was devastated that Gabe’s PICC line had to be taken out and a new one placed. Yesterday morning a nurse practitioner tried to place a PICC line for two and a half hours. The nurse said she lost track of how many times she had to stick Gabriel. She kept hitting the veins but the catheter wouldn’t weave. They failed to get it in. It was heart wrenching to see the deep and red indentations from the rubber band used to find his veins, to see the multiple IV sticks and the wounds they’ve left up and down his right arm and leg, to know that he was awake and suffering through all of it for two and a half hours…and for what?? It never placed! Why would God allow that to happen to Gabriel?? I’m trying not to think of the pain he’s been through because it makes me livid. I’m not sure who I’m so mad at…or maybe I just don’t want to admit who it is.

To make matters worse, Gabriel still needed a central catheter. The alternative to a PICC line is a Broviac line. A Broviac line is surgically placed, is more secure than a PICC line, and is good for a very long time…but it’s a surgical procedure that takes place down in the OR. The day Gabriel had surgery, I pleaded that I’d NEVER have to see him be wheeled away from me like that again. Well, a few days later my very sick baby on life support was wheeled away for the second time. Yesterday would have been the third time, except thankfully the OR team was able to come to him. Gabriel was given a strong pain medication and a paralyzer. I was told that he was out for the actual procedure, but woke up afterwards with his blood pressure sky rocketing and his heart rate dropping, which are both signs of significant pain. This Broviac line is in his upper thigh, it’s held into place by stitches, and there is a second incision about an inch up to make sure the line was placed correctly in the vein. I’m really trying to block out the thoughts of his pain and reassure both of us that all of this is happening so that he can come home with mommy. This isn’t fair, especially to him. After all of this, God has to have a big plan for Gabriel…it’s the only thought that gets me through seeing him go through these things.

I think I’ve written this in a previous entry, but it just seems like Gabriel can never catch a break! Before it was decided that Gabriel would have the Broviac line put in yesterday, his doctor ordered that he have an OG put in (feeding tube in his mouth) and start receiving 1 mL of breast milk per hour continuously (there are 30 mL in 1 ounce, it’s about the size of one drop). This was the news we’ve been waiting for…except that once we got the call from the surgeon, they had to stop the feedings and suction out everything that had reached his stomach even though he only had about .5 mL! It seems like we get to take one step forward and then it’s yanked out from underneath us! Of course they didn’t resume his feedings afterwards. Of course not.

On a positive note, Gabriel should be progressing towards a conventional ventilator tomorrow and off of the high frequency vent. They also started his feedings again today! He has received 10 mL of breast milk so far and has exceeded the medical expectations! His body is actually trying to digest the milk and it’s making its way through his digestive track! It’s amazing that his stomach contents can be easily suctioned out and examined to see what his body is doing with it all… and to see that his body is doing beautifully! Gabriel is now out of his incubator and into a transition bed post-surgery until he heals and can then be in an open crib. Since he’s in this “open warmer”, I’m able to give him a kiss every night now. Indescribable. I wish I could insert my tears of extreme joy here.

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