Thursday, July 17, 2008

DAY 10: JULY 15, 2008

I fell into bed last night around midnight without updating here and I tossed and turned all night over it. Writing here has become such a calming part of my routine, that I hadn't put down the day's events felt like something was missing.

Here's Finn's crib - they added a mobile to it today:

Sleeping, as usual.

Feeding time. This is Prunella (Prinella?), our nurse for today. She's my age, from Sweden and I just fell in love with her. She's my favorite nurse we've had so far.

He's tolerating feeds very well - no reflux issues, no blood in his poop or anything, everything is going through him properly, so that's all very good news. They've increased his volume from 10 ccs per feeding to 15, and as he continues to tolerate well, the volume will be increased by 5 ccs every 12 hours. They want to get him up to about 50 ccs every 3 hours, plus he needs to show appropriate weight gain, before they'll discharge him to come home. It is feasible that he could come home by Sunday or Monday. I'm trying to be optimistic but realistic about this.

The attending physician removed the steri-strips from his incision today, and voila:

I'm really amazed at how well it has healed already. The surgeon used dissolvable sutures, but I still expected to see a big scabby gash when the dressing was removed, but it actually looks really good.

Notice he still has his umbilical cord stump. I'm kind of surprised he hasn't dropped it. I asked the nurse to post a sign in his room alerting whichever nurse is there when he does lose it to please save it for me. I've saved each of my babies' belly button stumps.

Daddy and his boy-

We got a call at home from the cardiologist this afternoon so we could get clarification on Finn's heart issue. So here's the deal: it's not that we were given inaccurate information, we were just not given complete information - which to me is almost as bad. Finnian was apparently born with TWO holes in his heart - a PFO (??) and an ASD. Th PFO did close. The ASD has not closed. We will go back in 3 months for another echo so it can be monitored.


I was also visited by our case worker today. Yes, we have a case worker. We also have a social worker, and a psychologist, and a feeding and development team, and a surgeon, and a cardiologist, and a lactation consultant, and a myriad of nurses. Anyway, the case worker came to see me today to give me all the information on how to get "early intervention" started for Finnian once we get him home. Early intervention . . . it's a term I'm hearing over and over. I asked her, "Really? He needs intervention even as an infant?" She said, "Yep, he'll be going to baby school." I started crying. It's like this effing club we're being forced to join. I don't want to be a member. Can't I just decline and pretend we have a normal life? She was not sympathetic, just very matter of fact. "You want him to be the best he can be, don't you?" Yes, of course. So she will be making the referrals for us to something called Regional Center, where they will come out to our house and evaluate Finn in a few weeks and come up with a plan for whatever therapies he'll need over the first 3 years of his life. She also made a referral for a Public Health Nurse to come to the house and monitor Finn's physical well-being on a periodic basis. We can decline that if we want. I'm not sure that's something I think is necessary or welcome.


I feel so completely frightened of all this unknown stuff. This is all totally foreign to me. I've never had any personal experience with anyone with a disability . . . and to be perfectly honest (and I feel ashamed admitting this), people with disabilities have always intimidated me. The closest I've come is the close friendship I developed for a while with Michael's good friend who is deaf, and his wife, who is also deaf. For a period of a few years, the four of us spent a whole lot of time together, and I learned how to communicate with them - a tiny bit of signing, but mostly just getting to know one another's gestures, and yes, even note-writing back and forth. I came to feel perfectly comfortable with them, but that's the closest I've come to dealing with anything remotely like what we're facing now. Michael, on the other hand, has had years and years of dealing with people with all kinds of disabilities - that was his first career, so to speak, working as a sign language interpreter which put him, of course, with deaf people, but he also did years of work with blind people and people with all kinds of other disabilities - CP, autism, brain injured, etc. So this isn't so completely foreign and frightening to him I think.


So, the best news for last. I arrived at the hospital around noon, the plan being that I would be there for his scheduled feeding and attempt to nurse him. Sue had suggested that I try using a nipple shield since he seems to respond to the sensory input he gets from the rigid bottle nipple. So the nurse got me a nipple shield and I tried that. It didn't go well. He wouldn't latch on and just got upset. They'll only let me try for 10 minutes or so because they don't want to wear him out so he won't take a bottle. They know how important it is to me to get him breastfeeding, and the whole staff is very supportive of that, but practically speaking, they're not going to wait until he's breastfeeding well to discharge him from the hospital. The main goal is just to get him taking full feeds by mouth and get him off the IV. So I tried nursing him, and it didn't go well. I hung around for his 3:00 feeding and tried again. No luck. I left the hospital feeling sad and discouraged, but telling myself it's way too early to give up, we can still make this happen with time and patience.

Alycia came over after work to stay with the kids and Michael and I went and grabbed a quick dinner and headed back to the hospital. I wanted to be there for Finn's 9:00 feeding. We got there, got settled, and I put the nipple shield on, really expecting more of the same unwillingness from Finn, and . . . he latched on! He stayed latched on! He nursed!! He nursed for a good 20 minutes!!!!!!

I hesitated posting pics here, but I figured, hell, I've never been shy about breastfeeding in public anyway, so what's the difference? You've seen one boob, you've seen them all, right ;)

Anyhow, I can't even express how much this made my day. I feel so hopeful now. I know we still have what will probably be a long road ahead of us as far as breastfeeding, but this is a start. It's a start.


Janet said...

Hi Lisa!
I quickly scanned through the pics first before reading your blog and as soon as I saw the bfing ones I thought "OMG Finn is feeding YAAYY!!!" and I wanted to read that first but managed to control myself and start at the top and read the best part last.... You are right about his scar-it looks really minimal to me, it is amazing how fast babies heal from surgeries. Way to go on the preserverence (spp?) with the feedings!
Jan (Four4us)

Anonymous said...

Hi there - you don't know me, but I'm a good friend of Audrey's. I live in the UK but have visited California and Audrey several times. My name is Nerys, but I often use the nickname Nezza, hence my screen name here.

I'm sorry you're having to tread this particular journey, but I really do think you've made a fantastic start. I also think it's amazing you're managing to do this blog along side everything that must be racing around your head. And very brave too.

It's very quickly become one of my daily 'must-reads' - my heart in my mouth: "Please let them have had a good day today"

I'm SO pleased you got him to nurse. That's fantastic news! A small, but very significant milestone.

Anyway, I shall continue to follow Finn's progress with interest, and will keep on 'wafting' positive vibes from across the pond.

P.S. - he's gorgeous!

Carla said...

Oh my! I am weeping big, deep from my gut tears at the sight of you nursing Finn. In fact, I'm upsetting Claire and so I will end this here and write more later. Hugs.

sakun said...

oh my goodness....what amazing news lisa...he's me emotional but reading about it got me all teary eyed...i know how important nursing is to so happy...yeah finnian...i am so glad you stuck with it! & yes you've seen one you've see them all...the pics are beautiful..his scar looks great....quick healer....he is gorgeous....sending lots of hugs....

Anonymous said...

I know so very well that deep desire to nurse your babies! With my first one it was maddening and I was so determined. It is such a bond! I am so excited that little Finn is nursing, I hope it continues well and that he only gets his nutrition from you!! I know you said you aren't really religious, me either but I am thinking of you all and hoping you the family adjusts soon. (I know that sounds corny but I don't really know how to put it.) But I am thinking of you all and Finn is beautiful! I love his name! My oldest is Finley and we call her Fin. Take care!

Kristin said...

Hi Lisa,

I'm a "lurker" from and have been following your and Finn's story. Your perseverance and Finn's strength and beauty (my lord, that child is gorgeous) are so inspiring. I know you're not a praying person, but I am, so I hope you don't mind that I've been sending some up for you guys. (They can't hurt, right?)

Anyway, I'm so thrilled to read that Finn is BFing and making such progress. And his scar looks amazing...the surgeon did a great job. Anyway, hang in there, and thanks for sharing your experiences with the rest of us. You're a strong, strong woman and Mama!

Kendergirl said...

(From the Birthing Naturally board)

OMG, that it so awesome you got him to nurse! What a fantastic first step. He has been doing so well, you can tell he's a fighter! I hope he continues to take leaps and bounds, and that you can have the breastfeeding relationship you hope for.

I'm amazed at how good his scar looks. That's really great for how little time had pasted. Go Finn!

Being afraid of the unknown is understandable. As you go on this journey, you'll grow a lot, and soon it won't be unusual for you. All you have to worry about right now is getting your little boy home, and hopefully breastfeeding, and the rest can come later.

Momto4 said...

Way To Go Lisa *YeaH* I can feel the happiness through your written words!! I am so happy for you *HugeHugs* For You, Finn & Your Family*

milky1980 said...

OMG....How wonderful!!!!! Huge victory!!!! Congrats mamma!!

AudraO said...

Hi Lisa, I'm so thrilled for you that Finnian nursed, I can only imagine how you feel. His incision looks great, sending ~~healing vibes~~ that his recovery continues this smooth.

I completely understand how you feel regarding the team assembled to help your son. Reading your words with the emotion that you write with gives me deja-vu. I used to have daydreams of just keeping my son home, just him and I (he was our first) and everything would be ok as long as he was with *me*, but logic dictates otherwise and that hurts. ~~hugest hugs~~

Anonymous said...

Yay for successful BF!! I'm thinking about you every day hun. I'm here if you need me.

~Andrea & Sofia

Karly said...

Congrats on the BFing! What wonderful progress.

And yes, the EI and hoopla seems very overwhelming at first. I remember being shocked when a IEP was created for my baby (a plan with her goals for the next year). It really seems crazy, but for us, it really just started out as having someone come and play with our child. The stuff that is more recognizable as "therapy" just creeps in slowly over time, so you are less aware. Hang in there. It's definitely hard at first, but you are doing great.

GraphiczAddicts said...

YES!!! So relieved to see Finnian is nursing!!! Best news! WTG Mumma and Finn!

Nicole O'Dell said...

His little head is so sweet! He just melts my heart. TFS...prayers continue for all of you!

tinyscrafts said...

the regional center rocks. You be sure and let them know what Michael does for a living, that will help Finn get the services he needs. My friends sued to get their autism services but the center has been great. I'm with you probably on the public health nurse LOL

yaaaaaa boobs! ps YOU LOOK GREAT!

Larry said...

You and he look fantastic - so thrilled to see you nursing him - a beautiful sight! The regional center was great to work with for Matt's speech so be open to it - and as the daughter of a public health nurse I say keep an open mind about that - the person they send could be really great and give you comfort that all is progressing well - but if he/she gives you the creeps or feels like an intrusion/imposition, by all means ditch it! You always have to do what feels right for you and him. Love, Lisa B

Jodi said...

Right now, the world's upside because the "experts" have fulltime care of your baby and you and Michael are "visiting" him. What an awful feeling! I think once you get Finn home and can be alone with him (without watchful eyes and timers) you might feel better about having someone come visit.

Anonymous said...

Lisa, I noticed you mentioned "Regional Center." There's a woman on my birth board whose son has been getting services through them for the past two years. He's on the autistic spectrum and the work they've done with him has made a huge difference. I'm sure you won't regret having Finn evaluated. That place is apparently a bunch of wonder-workers! (((HUGS)))

Anonymous said...

OH Lisa!!! This post brought huge tears to my eyes, way to go mama & way to go Finn. Oh how absolutley wonderful!! Those pictures are beautiful Lisa. (((big hugs)))

~This is Chimmy~

Amber_daisy said...

Lisa, I'm just reading your blog now, but I wanted to say that the pics of you nursing Finn are amazing! I'm so glad that he's doing so well. I know it won't be easy for the two of you to get into your rhythm, but it WILL happen! You're doing so wonderful. You're an amazing mommy.