From Megan

So I am going to attempt to begin creating posts of our time at home. Up until this point, it has been a challenge to keep our heads above water. Not that everything is hunky-dory now, but I do feel as if some semblance of normalcy and routine has been established. Here is what our day looks like: Muriel eats every 3 hours, whether she likes it or not (unfortunately, it is usually the latter). First we attempt a small amount of breast milk with added formula for extra calories in a bottle. She then gets the rest of her feeding via NG tube and syringe. This whole process takes about an hour. As of late we have had troubles with Muriel keeping her food down. She is still gaining weight, but it is so frustrating and heart wrenching to spend an hour getting her fed only to have it come back up for seemingly no reason! Alas, we can't complain; she came home at 6lbs. 12oz. and is now 8lbs. 7oz.! I also try to pump every time she is fed, which takes about a half hour so basically 12 out of every 24 hours is devoted to feeding!

I wish Muriel would take a cue from her big sisters who are fantastic eaters!








The girls are eating a meal brought from one of my fantastic coworkers! I work with kind, generous, caring people who have been bringing delicious meals to our family. My mom and Madeline and Mirabelle were very appreciative of the meals when we were gone for those weeks in the hospital. Now Jeff and I have been enjoying the culinary talents of my Peterson family! Thank you. Thank you. Thank you. It has been a tremendous gift and I cannot express how much we appreciate the meals, toys, household supplies, and groceries!

Sleeping Beauty

This is my favorite picture of Muriel holding her heart...

Back in the hospital

Posting from my phone. Technology is amazing. Here we are in the Peds Emergency Room. Megan brought Muriel to the hospital earlier today to meet with the Speech Therapist, but got sidetracked by showing her chest incision, which looked kind of angry red. Before she knew it the room was full of doctors, including one of her surgeons and her favorite cardiologist Dr. Melissa. They decided to take some blood and run an echocardiogram, so poor Muriel was here all day. The nurse discovered some puss that there was minor concern over, but in the end they came home.

Last night at the hospital

Sorry so late posting today - I started working again yesterday, and am so far behind I am overwhelmed.  Have also been back and forth to the hospital between conference calls as the nurses prepare us for taking Muriel home tomorrow.

Yes - we are taking her home tomorrow!

She is now off ALL drugs, so we don't have any to administer at home.  Yesterday she lost the cannula, her final femoral central line (though she gained an IV in her hand), the wires for her external pacemaker, the drug for keeping her central line open, and the diaretic (Lasix) drip.

This morning she had her first bottle - 40ml of fortified breast milk.  It didn't go down perfectly, but hey - it was her first bottle!  A little later she had an x-ray while drinking a bottle, to see if she was getting any in her lungs.  Something we very much take for granted, it is quite a feat to manage breathing, sucking, and swallowing all at the same time.  She hasn't had any practice, so no surprise she was having a little trouble.

We both got a chance to stick a long (Nasogastric) tube down her nose into her stomach, as we may be required to change it over the next few weeks, and will have to use it to feed her every three hours.  The basic plan is to fatten her up for her next surgery.  So she will get mom's breast milk mixed with formula, to increase the Kcal per ounce (to 27 from 20).  50ml every three hours to start.  She gets to take the first 10ml by bottle, providing she can down it in less than ten minutes.  The rest she gets by tube.  They don't want to overtax her - apparently drinking from a bottle is a high calorie burning activity, which kind of defeats the purpose.  Hoping to have her gain 20-30 grams per day.  Adds up I suppose!


She had a final echo-cardiogram today and a hearing test (passed).  Seems every specialist in the hospital came by to give us parting information.  Also met with a nurse representing home health care.  We will have a nurse visit our home three days a week at first, tapering off over time.  She will do assessments and report back to the cardiologists looking after us.


We are supposed to spend the night in her room tonight to practice the various things we will need to do, which basically boils down to feeding her, giving her a vitamin dose, and changing her diapers... not nearly the difficulties earlier envisioned.


For the next month especially, the next two in general, her immune system will be compromised due to the surgery.  That being the case we will have to severely limit visitors, and if you have even the slightest sniffle we won't let you into our house!  Thereafter she should be more in-line with the immune system of any two month old, which isn't saying a heck of a lot more.


Finally we had a professional photographer come in and take some pictures, for which we bought the CD.  Here are a few of the really good ones, though they are all ridiculously cute.


I'll probably cut back on the posts now... there will be a few here and there as we struggle with managing her at home and pictures as she gets bigger.  I'll fire back up again as we approach the next surgery in a few months.  Thanks to all who have followed us and projected good thoughts and energy our way - it seems to have worked!

Preparing to go home

We heard this morning that Muriel is considered ready to leave the ICU.  She would be moved "downstairs" now if there were beds, but at the moment there are none.  Megan stayed with her this morning as I tried to get things ready to start working again, and of course I missed a bunch.

Her "jumper cables" (the wires that connected her to the external pacemaker) were removed this morning.  Megan learned how to place the "NG Tube" that runs through a nostril to her stomach (she is getting her breast milk and meds through this tube right now), in case she yanks it out by accident when we are home.  With any luck she won't need it when we get home, but apparently we are supposed to leave it in for a month just in case.

In all she is doing very well today.  Her airflow through the nasal cannulus is down to .5 liters per minute (next to nothing really), and her oxygen is back to 21% - normal air.  They reduced the diaretics (just Lasix now), and discontinued the blood pressure drugs.  She is basically on nothing at this point.  For sure we should be home by the weekend.

Seen here are the last few devices in the room.  The bag at the top is "Heparin" - an anti-coagulant that is to keep her IV lines open.  The pump in the middle - the last one running - has a syringe of Potassium to keep her electrolytes in balance.  Without this balancing the diaretics she has been receiving her heart has minor arythmia.  We won't be able to measure this at home, so we want to make sure it is under control before we leave.  They continue to reduce the diaretics, so perhaps this won't be needed much longer.


More later when we find out if we are moving into the regular hospital today...

Happy Easter!

Hangin' with Dad

No better Easter present than to hold your newborn sleeping in your arms.  Muriel is now getting more rest than we are for sure.  Literally everything is better now - blood gases all normal, flow down to 2 liters/min, breast milk started again last night on continuous drip, breathing normal and relaxed.  They are to remove her central line IVs sometime tonight and put a new IV into her hand to take their place.  I guess they tried earlier this morning and couldn't get it to take, so decided to wait.  I heard that her x-rays were looking better, but the respiratory therapists are still coming by every three hours (back from two) and performing percussion.  She really doesn't appreciate it!

Our other two girls left Ronald McDonald house this morning for Aunt Cookie's house for the annual Easter egg hunt.  Felt very bad that they couldn't visit their new sister.  Madeline asked about her several times, and we just had to tell her Muriel is still sick, and she can't see you yet...

What a rollercoaster ride.  I was sitting here in her room when the doctor came by on rounds, and listened as the nurses updated her on progress.  I literally felt embarrassed at our meltdown day before yesterday, but she has apparently seen worse (so she says!).  I apologized, at any rate.  We are in very good hands for sure.  I'll try not to be a doubter again!

It is still a tangle, but the nurses are very accommodating when we want to hold her.  Megan got to do it last night while I was wrestling with Madeline and Mirabelle, so I got to do it today.  What a wonderful feeling, especially when I know she is comfortable and relaxed.  Fingers crossed we have passed over the peak of the difficulties, at least for this stay.  I imagine early next week we will start hearing about plans to get out of here.  I don't want to ask and jinx things.

Happy Easter everyone!

Better today

Muriel loves her nook - a good sign that she will quickly
take to bottle and hopefully breast soon...

Sorry didn't post again last night.  I drove back to Naperville and picked up Madeline and Mirabelle, and we had our hands FULL pretty much all night long.  All four of us are sure to make a pretty sight at dinner tonight with bags under our eyes.

Yesterday was rough.  My last post I mentioned that her CO2 had gone back up, and the various things that would be done about it.  It got worse before it got better, and by mid-afternoon it was really hard to watch poor Muriel trying desperately to breathe.  Her nostrils would flare, her whole chest would constrict, and she made little grunting noises that we are told is her body's attempt to rid itself of excess CO2.  Though every nurse that came in did their best to console and reassure us, we asked Dr. Nater to come speak to us.  She managed to talk us off the ledge, and convinced us that though she is having a rough time she has to just get through it.  She is building up strength in her lungs and muscles and is fully expected to "get better" - we need to give her time.  This concept was later reinforced by Dr. Sajan when I was able to speak to him near midnight.  There is concern and empathy, but the medical staff is not worried, and all have promised that if they ever are, they will let us know.

One additional minor complication arose yesterday.  Muriel seems to have no trouble with bowel movements, though I don't really understand what is filling her bowels!  One such incident managed to soil the dressing on her right femoral artery (?) central line IV.  Worrisome, as this is one of the riskier points of possible infection.  The nurse who changed her quickly changed the dressing, and discovered a very ugly looking blister.  It had not "popped" at that point, so there was no immediate concern.  It did, however, pop last night.  They sent off some of the fluid for culture which came back negative initially.  They will continue to try and grow it for four days, and if anything shows up she will be back on antibiotics immediately.

Sleep?  We thought this was a party!

Megan and I traded off visits late last night as we struggled to get our other two girls to bed, and I have to admit she started looking better even then.  Today, at just after lunch, she looks MUCH better.  Doesn't seem to be struggling anymore, and was sleeping peacefully.  Her oxygen is still augmented, but only slightly (25%).  Her flow is still augmented, but down to six from seven (out of ten).  Unfortunately as long as the the flow is above 3 (liters per minute) she cannot have any milk.  So she is getting nutrients by IV again for now.  The respiratory therapists come by every two hours now (up from three) to try to clear the lungs, which on last night's x-ray still looked hazy, though now on the lower left lung (the upper right has cleared apparently).  Another thing that is hard to watch - the percussion I understand and of course it seems to be working, but there must be something instinctual to explain how I feel about watching someone whack my child!

All the respiratory therapists and the nurses have been unable to suction any of the obstructions.  It is apparently very difficult to get the catheter down the esophagus to where it needs to be, so they tend to wait for the baby to cough it up and get it from the back of the throat, which she hasn't been doing.  Diaretics are still being given to try and dry up the fluids, but this seems to be thicker mucus that won't respond.  Another drug to break up the mucus (and another to counter the tendency for the bronchial tubes to close up when the mucus busting drug is given) is being administered as well.

I don't know if I will post again tonight or not - I know there are a great many readers at this point, judging from the amount of  "please post" texts, emails, and voicemails I am receiving :)  We will have our hands full again tonight with our other girls.  Mom is taking them to "Aunt Cookie's" (Gayles) house tomorrow for the annual Easter egg hunt, and I will be here with Muriel.  So probably one or two more tomorrow.  Don't worry - if anything really newsworthy happens I will get something out even if it is without pics.

Thanks everyone for your frequent well wishes, the comments on the blog, and the overwhelming support we have received from every possible angle.  As Megan has passed on to several people, my faith in community has been reassured.  I don't know how we would have survived this far without all of you.