Category: Birth & NICU Stay

I wear red for Logan.

The Month of February is Congenital Heart Disease Awareness Month. Today had me thinking about the last 3 years and everything we have been thru. Honestly, I don’t know how I got thru it. From getting the devastating diagnosis that kept getting worse every single time we saw a new doctor, to having to rock him in my arms for 8-10 hours a day just to keep him calm while he was in severe congestive heart failure, to his first surgery in which we spent 6 weeks in an intensive care unit wondering if he would ever come home. During his second surgery (his ‘sutureless’) which was a complete shock in and of itself, we thought we were having a cath, but 4 days later we were having his 2nd open heart surgery. The most traumatic moment was when we came the closest to losing him. I remember his heart rate was getting up to 285 and his BP was dropping to almost 30….
His surgeon, looking very concerned said (which is forever ingrained in my mind) “I have to get in there right now, there is no time for anesthesia to come, I need to operate now.” We left the room shaking….I asked the nurse, “no anesthesia?” I was told, “well he has morphine in his system.”
These moments are the nightmares I live with every day. I know that I will never be the same.

I wear red for Logan.

Today had me thinking about all the children and their parents that I have gotten to know. The children that have passed on from this life are the ones that leave me with a burning desire to advocate and improve the outcomes for our kids.

I wear red for William.

I wear red for Noah.

I wear red for Elise.

I wear red for Pierce.

I wear red Ava.

I wear red for Rita.

I wear red for Jayson.

I wear red for EJ.

I wear red for Brookyn.

I wear red for Savannah.

I wear red for the countless heterotaxy children that I never met but whom I will forever be connected to by heart.

I don’t think its possible to describe the life we lead as parents to these children. The ups then downs, the unknowns, the waiting, the questions that can’t even be answered.
“there just aren’t enough kids alive, with what Logan has to have any real answers.” I have been told that one countless times.
If you just look at Logan’s first year of life, you will get a glimpse, of what our life has been like.

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As far from any dream about ‘ideal birth plans’ as one could get

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He was taken from me immediately, and I was not able to see him till the next day.  Excruciating is an understatement.

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Staring at my boys the last night before Logan’s first and most risky surgery, wondering if this was the last time Ethan would see his brother. At this point even though Logan looks like a normal baby….he really only had weeks to live.

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His bidirectional Glenn, AV valve repair, TAPVR repair, and SVC ligation.

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Yes, this was Logan’s post-Glenn oxygen sats.

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See how very blue he was in this picture?  It looks like he is holding his breath or something but in fact the path that blood goes after getting oxygenated in the lungs was blocked and he had close to only have of the oxygen in his blood that a healthy child should have.

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At this appointment I was told that Logan’s only chance of survival was a bilateral lung and heart transplant, because that blockage was not ‘fixable.’  This was the point that I decided that the only team I was going to listen to was Boston Children’s Hospital.  They disagreed, and this is when he had his ‘sutureless’ repair.

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Despite Dr. Jim Lock doing an amazing cardiac cath and bringing Logan’s sats up 20 points, it was decided that he needed to have the obstruction surgically removed.

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Despite the surgery opening up the pulmonary veins he still settled out in the low to mid 70’s post Glenn.  His heart however, was not having to work as hard, and for the first time, he didn’t become drenched in sweat while eating or crying.

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Logan on his first birthday.  At 12 months old, Logan could not sit, crawl, or roll, Logan wasn’t even strong enough to hold his head up yet.  He was medically anorexic and wearing 3-6 month clothing.

This was just Logan’s first 12 months of life. 

That is why,

I wear red for Logan.

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The good, the bad, and THE REALLY UGLY.

 Wed.  (6/16)

I was very anxious to hear what the results of the cath. conference were and got there pretty early.  Guess who was there.  Yes, it was another day of Humpty Dumpty (see previous post).  I had yet to this point had the same nurse twice so it didn’t even occur to me that we would have her again.  The morning went by very slow as I didn’t hear anything from anybody I really wanted to know if Logan was going to come home tomorrow.  I called the cardiologist early afternoon to see if he would get back to me and tell me the news.  While I waited to hear back from him, I had to sit yet again with that nurse while she kept pumping air into his NG tube.  I showed her that when I check placement I let some the air out before I pump it back in, and she looked at me like a deer in headlights and just said ‘Oh, ok.’

Unbelievable.

 Logan has been super sleepy and when he eats thru his tube (especially while he is sound asleep) he doesn’t burp and has no way of allowing air out of his belly.  Not to mention that some of these nurses act as if they are pumping up a bicycle tire while futzing with his line (not gentle at all).  So anyway, Scott and I tried to get ahold of a Neonatalogist to express our complaints to him (about Humpty Dumpty) but of course the NN was ‘tied up.’  I literally have asked to speak with a NN almost everyday and everyday they are, ‘tied up.’  I said that it was really important that I speak with someone so they eventually sent over a resident.  Scott and I expressed our complaints about the one nurse and asked that she just not be assigned to us again.  She said that was no problem.  When Humpty Dumpty’s shift was over we had a new nurse who was once again wonderful. 

Logan’s cardiologist called in the afternoon and told us that all the Dr.’s agreed that Logan doesn’t need surgery right now and that the next step was to get him home.  So we spent the afternoon watching videos and finishing up all the home care teaching.  We went home in a great mood, and were very excited to pick Logan up the following morning. 

Thurs. (6/17)

Was a horrible day.  I completely lost my temper with the NN and got into a very ‘heated’ conversation with the surgeon.  It was not the most appropriate reaction that I had, to say the least,  but there were a number of circumstances that led up to it;  it really was the perfect storm. 

I showed up with my Mother, Scott had a business meeting he couldn’t get out of, and we thought this was going to be an easy day of just getting discharged.  As soon as we got there I was met by the NN and the cardiologist who told me they were going to pull the rug out from under me by not letting Logan go home today.  They started explaining something about him not eating, kidney function, BUN levels. They kept telling me that these heart kids just have trouble eating and digesting.  They said they were going to take him off his diuretic and stop adding formula my breast milk.  Because they were going discontinue  both the formula and the diuretic I was under the assumption that it was the combination of the both that caused him to get so sick.  It says right on the Similac can that changing the water/formula ratio can be hard on a babies kidney’s, and I couldn’t understand why they could miss something so basic. The NN was incredibly condescending and kept asking me if I understood the heart condition my baby had.  I told him that the problem was that he didn’t understand my son’s heart condition.  Whatever they were telling was not adding up in my mind.  It just wasn’t making sense that this was directly related to his heart.  Later, when I got home I looked up the medications that he was on to see if that was the cause.  I didn’t think about it at first because MULTIPLE people in the NICU had told me the meds he was on didn’t really have any side effects.  I am quickly learning that most people don’t know what they are talking about.  Anyway, his problems were from the medications he was on. 

Now, if someone had told me upfront, that they were going to put him on meds that may make him uncomfortable for a bit and while they play with the dose, I wouldn’t have had any problem.  But no one told me.    They just kept telling me he was like that because of his heart condition and that something may be wrong with his kidney’s and/or intestines.  Which I still believe was a misleading explanation for his state.  I am still perplexed as to why it was explained to me that way. 

Another extenuating circumstance that adding to my anger/sadness was that he shared a room with 6 other babies.  One had passed that morning, 2 were hour by hour (just waiting for urine output to stop), one had lymph nodes leaking and was undergoing experimental surgery, and one was born at 22 weeks.  It was, to say the least,a very stressful environment to be in.  One of the mothers had cried on my shoulder that morning and another mother was sitting next to me crying in the NICU all day.   Now, by nature, I am incredibly skeptical of everything and fairly distrusting by default; and the only Dr. I completely trusted and had confidence in was his cardiologist (Dr. Patel) and he was not returning my calls. 

 It was seriously the worst day of my life.   

Fri. (6/17)

I am not even going to write about this day.  Myself and Dr.’s frustration peaked this morning and it wasn’t pretty.  I went home to sleep and Scott stayed at the hospital.  In the end everything was worked out and Logan was feeling better off his diuretic and we were told that he could go home tomorrow. 

Sat. (6/18)

Logan got to come home.  I can’t even begin to explain how happy I was to have him home. 

There are just no words.

Days 6-8.

Sun. was just a quiet day at the NICU, not many Dr.’s were around and Logan ate well, and we just cuddled him all day.  He oxygen levels were coming down (which is good for him) and they were looking to be more in the mid 80’s instead of the 90’s.  We were told if his o2 was measuring in the 80’s he could come home, so we left Sun. night in a great mood. 

Mon. we decided that we would get there early to be there for rounds (when the Dr.’s and nurses discuss each patient).  When we walked in they were doing an echocardiogram on him and told us they wanted to check his pulmonary artery gradient to see if he needed surgery this afternoon.  We were completely shocked and had no idea what was going on, we had just had a great weekend with him.  Of course it turned out the surgeon wanted it done, he had an opening in the OR and wanted to see if  Logan was trending downhill in terms of Pulmonary Artery growth or not in case he had to do a banding surgery later that afternoon. 

The arteries going into Logan’s lungs are working better than the ones coming off his lungs back to his heart.  So what happens is the blood gets congested in the lungs.  When Logan’s oxygen levels are in the 90’s they think that is what is happening, because his single ventricle couldn’t be giving Logan’s body oxygen stats in the 90’s on its own, it just isn’t efficient enough.  So the surgeon feels that putting a band around the artery going into the lungs will slow that blood flow down and the blood flow will be more even on both sides of the lungs, causing less congestion. 

Well it turned out that his artery of his lungs had grown from 27mm (Fri.) to 40mm (Mon.) which is really good and great news.  I guess 50mm would have been better but 40mm means the surgeon does not think he will need surgery right away this week.  We were very relieved.  After that information we were told that he could probably come home on Wed. as long as he was consistently gaining weight, maintaining his body temp., and we knew how to take care of him at home.  So once again we went from completely terrified to cloud 9 within an hour.  (It’s all very exhausting).

We talked with Dr. Patel and he feels strongly that Logan should go as long as possible without surgery for many reasons.  One being that the pulmonary artery may narrow on its own over the next few weeks and if the surgeon put a band on now and then it continued to narrow we would have a whole new problem, not to mention the fact that Logan has no spleen and is at a high risk for infection, and that it is after all an OHS and things can go wrong.  Because Dr. Patel has studied this and researched this and has more experience with this specific CHD we are completely with him and his more ‘conservative’ approach to Logan.  He thinks we need to tough it out as long as possible before we do any surgery. 

The bigger, stronger, and more solid his cardiac structures are, the easier surgery it is to do surgery on him.  I read in a book that newborn cardiac surgery is like sewing wet tissue together, and that once they are a few months old it gets much easier. 

So we spent the rest of the day getting prepared for Logan to come home, which included, having to learn how to put his feeding tube in.  I thought I was going to throw up.  I had to measure a small tube and then thread it thru his nose into his stomach and then tape it down on his cheek.  We were told what to look for if we put it into his lung by accident or what to do if it came out of his mouth.  It was very upsetting and hard to do to your own baby.  We were told the first time is the worst and that we’ll get used to it.  I am just not sure.  I am thinking this may just have to be Scott’s job.  We were shown how to measure and give his medications, and how to fortify his milk with extra calories to help him gain weight.  We left in a great mood again.

Tues. was a completely different story.  We were met with a warm welcome by the voice of surgeon Smith on the phone telling us Logan might not go home tomorrow.  He said that Wed. morning he was going to present Logan’s information at a conference with a bunch of Dr.’s and that he wanted a consensus from everyone about when Logan should be coming home.  So we were obviously disappointed by that.  Then we, for the first time, had an awful NICU nurse. All the nurses I have meant in the NICU so far had been the kindest, sweetest, most gentle, patient, women I have ever come across.  Scott even mentioned that there is no way these nurses are paid enough for what they do and what they go thru, and how nice they are thru it all. 

Then today we had Humpty Dumpty the nurse.  She was not gentle at all, and she did everything to Logan so painfully slow that by the time she was done with assessments or taping something down, or weighing him he was so worked up and upset I could never feed him.  She also kept pumping tons of air into his feeding tube which gave him upset his stomach.  Then she decided it would be a good idea to give him his meds on an empty stomach (you know, he is on a hefty dose of antibiotics, I don’t think it takes a rocket scientist to know to take that with food).  So anyway, when we were done I told her I wanted to bottle feed right away so he wouldn’t get a stomach ache and she said ‘Yeah, maybe we should have waited until after he ate to give him his meds.’ Then I sat there for 20 minutes, got no milk from her, so I reminder her that he needed food, and she told me to wait.  I waited for another 25 minutes (while she just sat there charting) and watched him get a horrible stomach ache and began crying loudly and pink antibiotics kept coming up.  Right before I was about to get a different nurse she came over with milk in a bottle and then commented that he just wasn’t eating well today.  I WONDER WHY?  Anyway, I had to remove myself from the NICU because I was very close to causing a scene.  I was very glad that her shift was almost over and like all the other times we got a very nice and gentle nurse after her.  Logan continued to have an upset stomach the rest of day and didn’t eat well at all.  He actually didn’t nurse once which was upsetting but after having an NG tube put in twice and getting air pumped in and out, and the antibiotics, he was just not feeling well.  He little stomach was gurgling and I could just tell he was really uncomfortable.  So for the rest of the day we just tube feed him to give him a break and let him rest. 

The day ended very badly, the baby next to Logan is dying.  She was born very early (1 lb.) and they had to do an emergency surgery on her intestines because they were dying and her liver was bleeding.  There were about 12 Dr. around her talking very clinically about her condition and the surgeon said three times that she probably would not make it thru the night.  It was unbelievably upsetting.  I had just seen the mother in there a couple hours earlier and she looked so happy to see her baby.  Then as we were getting up to go she came and it was obvious she had just heard the news. 

I cried the rest of the night.  I cried for that little girls short painful life, for those parents who may only get to spend one day with their child, and I cried because I really don’t ever want that to be us. 

PLEASE, PLEASE, PLEASE…don’t let that be us.

Days 4 and 5.

We had a VERY good two days.  On the 4th day we started out talking with the surgeon again and the conversation went much better.  He was less aggressive about surgery talk and even told us it was looking like we wouldn’t need surgery next week.  I am wondering if maybe he had a talk with the cardiologist??? Hmmm…. 

Speaking of the cardiologist if there is anyone out there who is reading this blog that has a child with a severe heart defect (Especially Heterotaxy) I highly recommend speaking with Dr. Patel at Akron Children’s Hospital.  We are extremely lucky to live so close to a cardiologist who has actually written most of the literature that exists about Heterotaxy. He has also been one of the most sucessful at diagnosing Heterotaxy in utero. Which I have come to understand is a very hard diagnosis to make.  A lot of  mom’s have told me they didn’t find out exactly what their babie’s condition was until after they were born.  And really all of that would be meaningless if the following was not occurring….

EVERYTHING and I mean EVERYTHING that he told us before our child was even born was going to happen has so far happened.  We have 8+ Dr.s all giving us different information (not to mention dozens of NICU nurses) and Dr. Patel is the only one who has nailed Logan’s condition.  He knew exactly what his oxygen levels were going to be and how they were going to trend.   Even predicted accurately how all the other Dr. were going to respond.  Not to mention he has been the most calming and patient Dr. we have met with.  He is incredibly detailed, and explains everything so clearly, and is really good with handling all our emotions. My husband and I talk all the time about if we didn’t have Dr. Patel we would be in a completely different situation and much more confused.  Everyone can rattle off opinions all they want, but Dr. Patel is the only one who has actually been correct. 

I can’t even begin to know how he just fell in our lap.  I have never believed in things being ‘meant to be’ or ‘happening for a reason’, myself being very pragmatic, but I can’t help but think now that this is such a HUGE coincidence.  

And a message to Dr. Patel (if he ever read this) I just want him to know that he will have forever changed how I view this life and our journey in it. 

Anyway, back to Logan…

He is eating really well which we were told was going to be the one thing to keep him in the NICU.  Breast feeding has gone extremely well.  Usually when we bottle feed it is because he gets so cozy breast-feeding that he falls asleep and because they are trying to monitor feeding amounts they want certain amounts taken in certain time frames and so we wake him up and just finish with a bottle to get the milk down and keep him on his every 3 hour schedule. 

His last IV was taken out, so all he has now is a feeding tube in thru his nose.  And the only reason why they are keeping it in is just in case he stops eating well they don’t have to put it back in which is uncomfortable for him.  He has external monitors on his chest and feet but that is it.  Otherwise, looking at him, you would never know anything was wrong with him.  

He is so sweet and easy-going, just like Ethan was at birth.  Two of the NICU nurses were saying he gets the cutest NICU baby award.  They said ’53 babies in here and he gets the award.’  I am sure they say that to all the parents but it’s still nice to hear. 

If everything keeps trending in the way it is currently we were told he could come home sometime next week.  

 I was discharged last night from the hospital and am at home now. 

It feels really good to be home and sleep in my own bed.

Third Day.

First, I just want to thank everyone for their support.  Everyone has been really wonderful.

Yesterday was quite a roller coaster ride.  We started off the day with great news.  Logan had his umbilical line taken out which is great news, its much easier to handle him without it.  He is doing so good that they showed me how I can just take him out of his isolette whenever I want and he can be held as much as I want to hold.  Many of the other premie’s in the NICU have more restrictions so we are lucky right now.  He nursed again perfectly without any struggle, and one of the NICU nurses mentioned that if we can get him eating on his own he could possible come home in less than a week.  The nurses wanted to do his first ‘real’ feeding.  When he is nursing with me occasionally he isn’t getting what they consider a full meal because my milk hasn’t come in yet.  The wanted him to eat 3 oz. and he only ate 2.5 oz.  Because he didn’t eat his full amount they are leaving his IV in his hand to continue giving him extra nutrition.

They did an abdominal ultrasound to take a look at all his other organs.  They confirmed that he is missing a spleen and they saw no evidence of his intestines being mal-rotated which was a big concern with his condition.  The ultrasound isn’t conclusive about the intestines but it is a good sign.  Another good sign is that so far he is going to the bathroom well which means that food is making its way thru his intestines, so far.  So we were very happy with everything that we were hearing.  A nurse even said that is starts getting 3 oz. down on a regular basis that she could see him coming home in 3-5 days.  So we were on cloud 9.

Then we met the surgeon.  He even stated he was ‘the reality check’. He immediately started talking about a possible OHS (open heart surgery) that Logan may need next week.  We have been told so many times by our cardiologist that he is so optimistic that nothing will need to be done for the first couple months that hearing its a 50/50 chance of next week being the first one was not what we wanted to hear.  He was worried about the blood flow from coming out of the lungs has a degree of obstruction so blood get stuck in his lungs to long causing congestion. He started him on diretics to help flush fluid out of his lungs and another medicine that helps his heart work, so his single ventricle doesn’t have to work so hard all on its own.

I let this surgeon know what our cardiologist had said about there being good chance that Logan won’t need surgery right away and he got very defensive and “I am the one who decides if and when he needs surgery, not the cardiologist.”  My husband got very angry put his hands up and said “WHOA” and explained (firmly) that we are the ones that decide if and when Logan has surgery and we will being taking all the Dr.’s opinions into account.

Its very confusing because we see two different cardiologists in the NICU, a neo-natologist, an infectious disease dr., the surgeon, and multiple nurses and every single one of them has a different opinion on how he doing, what needs to be done, what his oxygen levels really mean, when he will come home, when he’ll need surgery ect…  It is very tiring and exhausting to weed and filter all the different information and emotionally exhausting to go from cloud nine to talking with a surgeon about breaking his chest open next week and putting a bands around his arteries.

He did remind us that in the next couple days when his lung pressures change we are going to find out how his heart is going to handle everything.  He said there is a possibility that things can go very bad very fast.  So we are now just watching and waiting.

I will try to post later, but am dying to get back over to the NICU.

He’s Here.

Welcome little Logan

6 lbs. 4 oz.

This is Logan in his transport carrier about to be taken from Akron general to Akron Children’s Hosp. As soon as he was out they took him out of the OR (I did not even get to see him) they took him to another room to get all his lines in and take all his measurements.  I was put in a recovery room and had to wait 2 hours to see him.  When I did see him he was in this carrier and I was allowed to stick my hands in there and touch him for just a minute before they had to go.  I also stuck a little bunny in there with him that I had slept with the night before so he had something with him that smelled liked Mommy.  The next time I saw him was the following morning.

I really wanted to get to Children’s that evening but becuase of an allergy to their standard pain medications (Morphine and Percocet) they had a really hard time getting my pain under control.  They kept giving something that literally had no effect on me at all.  I was in excruciating pain for hours until they found a combination that helped with pain.  But even by 10pm that night I was still in too much pain to even nap/sleep so they had to give me a sleeping pill.  In the middle of the night a new nurse came and tried another combination of drugs that magically did the trick and I finally got pain relief.  By 9AM I was able to get up and go see Logan.

When I saw him I can’t even begin to describe the feeling.  He looked so tiny and fragile.  He has an IV in his hand and another one in his umbilical cord as well as 8 different monitors everywhere.  But he was also so cute and sweet looking.  Compared to all the other babies in the NICU (Neo Natal Intensive Care) he looked so big and healthy.  All the other babies in there were premies and some looked to be 1-2 lbs.  If you took away the cords and the monitors you wouldn’t even think anything was wrong with him.

I was able to nurse him which surprised me.  He latched on right away and the lactation consultant said we were a perfect nursing pair.

The first time I saw any signs of him being sick was when we tried to nurse him a second time that afternoon.  He wanted to nurse so bad but when he couldn’t latch on he got frustrated and started crying.  When he was crying his oxygen levels fell down to low 60s and he started turning blue.  It was really scary.  It took about 5 minutes to calm him down and to get his oxygen back up.  They told us that crying is like running a marathon for him and nursing is also very hard work.

His oxygen levels right now fluctuate between 75% and 94%.  Which is as good as can be expected for him right now.  In his situation his cardiologist said these levels are ideal.  In three to five days after birth certain pressure levels change in the lungs and how his heart handles these changes is going to tell os the real story of his condition.  But overall, right now, he is doing as good as we could have expected.

I will try to post more pictures soon, but I am super anxious to get back over there and see him.