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.

7 thoughts on “Days 6-8.”

  1. Kristen, You have a BEAUTIFUL baby! I know how frustrating and exhausting what you are going thru is. Your post today infuriated me! My son has a complete AV canal and went into CHF twice and pulmonary hypertension. We had an NG tube for 6 months, now we have a G-tube (so much better), and they also put on a PA band. We have had 6 hospital stays, 2 surgeries, 2 ambulance rides, ect So I have some experience with dealing with hospitals. Not to mention my BF is a hospital administrator and I always ask her what to do when things go wrong. If I may give a few suggestions, these are things that we did. I know every hospital is different and there are a different set of rules for the NICU but maybe some will help.
    – Remember, you are MAMMA! You have the power. I had a nurse say to me that if the moms would say stop they would but if not then they have to do what the doc says. IE: I only allowed them to draw blood once a day, maybe twice if emergency. This made the docs think and not just randomly order blood work on a whim, and it saved my baby pain.
    -Talk to the nurse manager. Let her know about humpty dumpty. If you don’t say something it will never get fixed. I had a nurse that would check placement every hour. I told her to stop and that I would give all meds and that placement of the NG tube only needed to be done once a shift. *you can also ask for a 60ml syringe, take out the plunger and vent the NG tube. this will help with gas. Anyway the Nurse manager came to talk to me and completely agreed with me. Plus gave me her card if I had any other problems and checked on us every few days.
    – Get your milk. Your job is feeding. This is not their priority. If your nurse won’t, ask the receptionist to get it for you, if she won’t get the nurse manager. I ended up buying a small refrigerator from Target $60 and put it on a luggage roller. I took it to all hospital stays and I refused to give the nurses my milk. They had to ask me for milk and if they were ‘busy’ then I would feed him. They thought I was crazy but I told them, ” I can’t explain to my 2 month old why his momma is just standing there and not feeding him. He doesn’t understand that the kiddo next to us is having a seizure. All he knows is that he is hungry and Momma won’t feed him.”
    -Keep a notebook. I kept one and wrote down times of test, blood draws, feeding, stats, blood pressure, temps, meds and dose(caught a nurse giving the wrong dose)and anything else. It got to the point where the docs trusted my notebook more than the nurses notes and commended me on it.
    -The conference is a good thing. Surgeons are good at what they do but they only think in terms of surgery. The PA band has been awesome for Caius but I’m glad he was older (4 mos). There should be an anesthesiologist, cardiologist and more in the conference which will help level out the surgeon.
    – Don’t get excited about going home until you are walking out the door. This is hard but it will help your emotions. They told us for two weeks that we would be going home tomorrow. They are trying to make you feel better but they don’t really know what will happen during the next day.

    I’m so glad you have Dr. Patel!! I do believe that things happen for a reason and I believe God brought your family together with Dr. Patel. What a blessing! My prayers are with you Mamma, this is a long hard road but know that you are in my prayers. Hug that gorgeous baby for me. If you ever need to talk to or want to bounce ideas off someone feel free to email me. Hugs, Autumn

  2. Sounds like Logan is a little fighter and of course is very lucky to have such caring parents looking after him. I will be thinking of him.

  3. Our thoughts and prayers are with you and your family. You are all very strong to have had to go through this entire ordeal but with your optimistic attitude does make a difference.

  4. Hi Kristen! Got here via Stef’s blog ~ from Lorain to Akron via Iowa 🙂

    If you find a nurse that you really really like, you can talk to the charge nurse [or whatever they call them at your hospital] and request that nurse to become Logan’s primary caregiver. Pick one for each shift, if you’d like! There’s a lot to be said for consistent and compassionate care when it comes to these babies.
    Logan is such a handsome fellow! Thank you for taking the time away from him to share your story.

  5. My heart goes out to you. My husband and I have had those days in the PICU where nothing sees to go right and the staff can be very upsetting to deal with. Fortunately it is usually resolved quickly with a shift change and things return back to normal.

    I try to remind myself that if we didn’t have a few “bad” days here and there we would never fully appreciate the “good” ones.

    Hang in there. I am praying every day that Logan continues to get stronger so he is able to come home for a while before surgery. Just try not to get your hopes too high. Things can change from minute to minute with these kids and it can be such a huge letdown when things don’t go exactly as we wish they would.

    I am also very sorry for the mother of the baby who is not doing well. We have also dealt with that during our hospital stays and it puts everything into perspective watching another family go through that. Makes you hug your baby a little tighter.

  6. Kristen –

    I found your blog through the 1in100 page. Our daughter, Caylen, has heterotaxy, double outlet right ventricle, dextrocardia, TGA, pulmonary stenosis, atrial ventricular discordance, among other things. We are praying so hard for Logan, as we are three years ahead of you in your journey and can sympathize so much with you and your husband. I can remember having to learn to put in her NG tube, the days of uncertainty about her survival, her coming home, her future surgeries, etc. Reading your blog tears at my heart, hating to hear that someone else is having to live this journey, too.

    If there is anything you need or if you ever need to talk, please let me know. My email is elmarshall04@aol.com. I am also the group coordinator for Mended Little Hearts of Mississippi. My contact information is on our FB pages. We are praying hard for Logan, that he will continue to do well, that he can go home soon, that his body, his heart will grow strong. Have hope, strength, comfort and peace knowing God is holding Logan in His arms, holding you close and that you are NEVER alone.

    Erin

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