Just a quick update, as there isn’t much time for a longer post right now, to let everyone know that Lila is finally at home safe and sound. We are elated, enamored and extremely exhausted. The last 48 hours or so have been trying, and at times, a comedy of errors, but we’re getting the hang of things. This is REALLY hard! We move into our new house next week, so there isn’t much “spare” time, but I’ll try to find a few moments to detail her first few days at home. I think it would make for some pretty entertaining reading. I hope everyone has a very happy Thanksgiving. We are spending Lila’s first Thanksgiving at home with a Tofurkey and a visit from the home health nurse. At least Tyler has the day off from work!
Day 65 November 18, 2010
I wrote the last post, but somehow forgot to publish it! Sorry to have kept you all thinking I was miserable for so long! Things have gotten better and I’m sooooo elated to report that we get to bring our baby home on Sunday. Somebody, pinch me, because this just doesn’t seem real.
The news came as somewhat of a shock to me this morning after having spent the last 24 hours struggling with a very difficult decision. Yesterday, we were given the option of having a feeding tube (G-tube) surgically placed in Lila’s belly and bringing her home. Or, give her a few more weeks to see if feedings improved. She’d hit a plateau with her feedings — only taking 40 to 50 percent of her volume — so this was an option to get us home. The surgery would require Lila going back on a breathing tube, pain medication, and, well … it’s surgery. With the feeding tube, we’d continue to bottle her every three hours at home, then whatever she didn’t take via bottle, we’d give her through the tube, just like we’ve been doing in the hospital. After some major soul-searching, input from family and friends, including my amazing support group of other pPROM mamas, we knew what our decision would be. I came to the hospital prepared to tell the doctor that we were opposed to the G-tube at this time. We felt it would be selfish not to give her a few more weeks just because we want her home with us. I also wanted to ask why she couldn’t come home with the NG tube, the tube she has in her nose now. It’s less invasive than surgery, it’s what she’s had all along and we’re used to it. Before I could even bring up the idea, the doctor offered it as a third option for us. My eyes lit up, I started bawling and said, “YES YES YES! I LOVE THAT OPTION!”
Going home with the NG tube, I’ve learned, is a bit controversial here in the halls of the ICC. The nurses don’t like the idea and the doctors don’t typically send babies home with it. Babies often pull the tube out, which is no big deal, but then the tube has to be replaced by a nurse, not by me (although, I’m sure I could handle it … 🙂 … ). The tube can also become misplaced, so I’d have to be trained on how to check for correct placement, etc. Hell yes, bring it on! I am capable of this. n Even one of our primary nurses said she wasn’t a fan of the idea at first, but when she thought about how committed we’ve been and just how much time we’ve spent with Lila and learning all that the nurses do to take care of her, she concluded it’s a great option for us. Everyone will have their opinions about this, but we feel this is a great option for us. Lila can come home and we can continue to work on bottling and breastfeeding. If she doesn’t show any improvement over the next six weeks or so, then we’ll have to consider the G-tube afterall. But I believe that once Lila gets home and has the same people caring for her around the clock, that she’ll take off on her feedings and all this talk about a G-tube will be a distant memory.
Since learning that Lila will come home this weekend, I’ve had an incredible dose of adrenaline pumping through my body. I brought her car seat in tonight and was so damn proud carrying that thing through the hospital. I’ve looked on with envy at the many parents I’ve seen coming or going with car seats knowing that someday we, too, would get to drive away with our daughter and GO HOME.
The next few days will be busy ones as we prepare the house for Lila and wrap up loose ends here at the hospital. We take our CPR course in the morning, then Lila goes in for her car seat test. She’ll get her feeding, then they sit her in the car seat for 45 minutes or so to see if her heart rate of o2 saturations drop. I’m confident Lila will pass, this, her very first test. Then, for the first time, we introduce our girl to the outside world and bring her home. Just in time for Thanksgiving.
As we head into the weekend, Lila is a completely different baby than she was at the beginning of the week. She’s back to her old self. Even better. The morning after I posted my last weary post — upset about the state of my daughter and frustrated by the lack of urgency to do anything about it — the doctor came in and said, “I’m going to have to eat my words. You were right, we’re going to start her diuretic again.” Hallelujah!
An hour after she got her Lasix, Lila had a diaper that weighed 130 grams, all urine. For comparison, an average diaper weighs 20-30 grams. She continued to lose that extra fluid over the next few days and she’s no longer the puffy baby she was on Monday. She weighs 6 lbs. 14 oz. Retaining fluid is a very common issue in preemies, especially ones with lung issues. Lila will go home on the diuretic.
She will also go home on oxygen. I’ve said this before, but we’re beginning to learn more about how much, how long, etc. They moved her to a half-liter of continuous flow oxygen, which she seems to like very much. This is what she will come home on. And today, we learned she will likely be on oxygen throughout the winter, maybe even longer. I guess I was surprised to hear this, but then again, I hadn’t given it much thought. I’m still so elated that my daughter is here, and despite some very expected lung problems, she’s alive and well.
Lila’s respiratory rate has improved and she’s not working nearly as hard to breathe. She seems to be sleeping better and is awake for longer periods. She’s a very content and happy baby, all things considered.
Bottling has picked up and Lila even enjoys nursing. Although she’s still not strong enough to feed this way, it’s something we both enjoy, so we do it. Bottling is our main focus now as it’s the only thing keeping her in the hospital. The other night she took three full feedings in-a-row via bottle, which has never happened before. I think she was telling all of us that she can do it, she just needs a bit more time. So many of you have asked when she will be coming home. She looks healthy, right? Even I need to remind myself that although she looks and seems very healthy, she was nine weeks early and has lung problems that make simple things like breathing and eating more difficult. She has what’s called Respiratory Distress Syndrome and will outgrow this with time. Will there be any lasting effects? We simply don’t know. With that said, I think Lila will be home in two to three weeks … right about the time we move into the new house. Don’t ask, we’ll figure it out. We always do.
I’ve been spending most of every day at the hospital. When I get home in the evening, I do a little packing or cleaning, go to bed and wake up to do it all over again. I’ve spent a lot of the last eight weeks alone with my daughter. Well, really for the last five months, I’ve been quite isolated from the world. More than ever, I really wish we had family around. Our only family member nearby is my sister and once Lila’s home, she’s going to be a huge help. I don’t think she quite knows just how much we need her. Our parents have made several trips to visit, which has been great, but if our families were closer, life would be easier. Of course our families are always a phone call away and would drive the four hours in a heartbeat if we needed them, but times when I’m packing up boxes and labeling them “wall decor,” I think to myself: “Wouldn’t it be nice to have a glass of wine with Mom while doing this?” Sometimes you just want your family around, not because you need them per se, but because you want them.
When I look back on this blog someday, I just know I’m going to get to the posts chronicling Lila’s birth and beyond and realize what a wreck I was. Hang in there with me, folks. My thoughts reflect my emotions — a jumbled mess.
Day 55 November 8, 2010
The past 24 hours have been awful … starting with arriving at the hospital last night to find a volunteer holding Lila to calm her down, right up to the nearly inedible Minute Rice and boxed Pav Bhaji that I had tonight for dinner. I’m starting to feel like the stress and heartache of the last five months will never be behind me.
Off and on for the past few days, Lila has been working much harder to breathe, and appears quite uncomfortable at times. Try taking quick, shallow breaths. I imagine this is how she feels. How awful would it be to not be able to take a nice, deep breath? When I walked in and saw the volunteer holding my baby, my heart sank. I should’ve been there to hold her. I’m so grateful there are volunteers to do this, but I should’ve been there to console my baby. Three days ago, they stopped her diuretic (which she’d been taking to deal with excess fluid), so I figured fluid was accumulating around her lungs. During the day, the doctor had ordered a chest x-ray for the next morning, but didn’t want to give her a dose of the diuretic just yet. Last night when I saw how hard she was working, I asked for the nurse practitioner from the NICU to come see her and hopefully give her a dose of the diuretic. She wouldn’t do it either, because her oxygen requirements were good and her chest sounds were clear. I finally got her calmed down and sleeping soundly. I considered staying with her for the night, but I was so tired and I knew I wouldn’t get any sleep in the hospital. I called Lila’s nurse before I went to sleep and learned she was doing much better. I slept well.
This morning, I checked the marker board in Lila’s room where they post her nurse’s name, her weight, etc. My heart sank again. She’d gained 84 grams in one day. The day before she gained 75 grams and the day before that, 45 grams. She’s only supposed to gain 20 to 30 grams a day. I knew just by looking at her that she was retaining a lot of fluid. Her face, neck and eyes were so puffy. A new doctor was rounding this week and she’d already been in to see Lila and also didn’t think she needed the diuretic. I was upset and asked to speak with the doctor. I needed a good reason for why they wouldn’t give her the diuretic. The doctor came in and I told her I thought Lila looked awful. The doctor explained that her chest x-ray was improved from last week, her blood gases were improved, her oxygen requirements were great, etc. There was no fluid around her lungs and the doctor wasn’t convinced that stopping her diuretic was what was causing her to work harder. In the meantime, Lila hadn’t been given a bottle in 24 hours (she was instead fed via NG tube) because all of the nurses felt she was breathing too fast to bottle. If the ticket out of this place is successful bottle feeding, how are we ever supposed to get there if she’s not even well enough to bottle feed? The doctor said she wanted to give Lila a chance to prove that she didn’t need the diuretic. If they started it again, she’d likely go home on it. So lets stay the course, keep a close eye on her and reevaluate tomorrow. The doctor also suggested that Lila’s change in breathing could have something to do with moving her from 1.5 liters of flow to 1 liter. She said if Lila is stable tomorrow she thought it would be a good idea to move her to .5 liters at 100 percent oxygen. She said a lot of times kids do better with this equation. I gave in. What else can I do? At some point, I need to put my faith in her medical team. Medically speaking, they do know best. I realize that a lot of what I write on here probably doesn’t make much sense to most of you, but it probably sounds familiar to any mom who has a baby in the hospital. This is why I do it.
Lila’s occupational therapist wanted to see her at noon for a bottle feeding and I thought, “Good luck, there’s no way she’s going to take a bottle while working that hard.” Once again, my daughter proved me wrong. She took more than half of her feeding and she did it without a single cough/gag/choking spell. The bottle relaxed her and she actually really enjoyed it. Her breathing calmed down and she seemed like a happy and content baby. I gave her a bath and she fell even more into a euphoric state. She really loves those baths. I rocked her to sleep and tucked her in. At 6 p.m., she took another bottle for me and did a great job with it. I’m crossing my fingers that things continue to improve. I hope she turns a corner soon.
I really don’t want to continue answering the question, “When does she get to come home?” I don’t know. Nobody knows. Surprisingly, Lila’s doctor on Sunday said he thought she’d be ready to come home in three to four weeks. Doctors don’t usually make these predictions. If it’s any longer than that, I don’t know what I’ll do. I’m already so upset that she’s not home yet. I keep focusing on the fact that by the time she comes home, I’ll have to go back to work. It’s not fair.
To end on a happier note, I just want to say that Tyler and I had a really good time on Friday for my birthday and our benefit. Everyone was so supportive and generous. Thanks to everyone who came out and to everyone who have sent gifts, called e-mailed, etc. I’m running way behind on my thank-you’s, but please know that we appreciate every bit of it.
Aaaaaannnnddddd … WE GOT THE HOUSE! The house we’ve had our hearts set on renting is officially ours and we move in Dec. 3. We cannot wait to get a fresh start in our new home.
Time for some Ben and Jerry’s. Goodnight!
Day 51 November 4, 2010
Warning!!! VENT/BITCH/GRIPE alert!!!
We left the hospital at 10 p.m. tonight, our stomachs growling. Neither of us had eaten dinner. So here we are at 11 p.m. eating sandwiches at home and looking at pictures of Lila wishing we were looking at her in person. We are so over this routine.
It’s hard to believe we’ve been essentially living at the hospital for the past 150 days. Well I’m finally starting to lose patience in this whole “process.” I just want my daughter home and I want her home NOW!!! They say that God doesn’t give you more than you can handle. God, if you’re listening, I don’t know how many more days of this I can handle!!!
Parenting under the watchful eye of the nurses has its benefits when it comes to being a first-time mom, especially to a preemie. But when you’re as independent as I am, most of the time you just want them to leave you the hell alone so you can take care of your baby. I keep telling myself how blessed we are for getting the opportunity to enjoy Lila while she’s in the hospital, but parenting under the hospital protocol and the nurses’ schedules is for the birds. No matter how many amenities they add to the room, or how many days in a row I wear my sweatpants, nothing about this situation feels like home.
The biggest heartache is being told when I can and cannot feed my baby. Lila is on a three-hour feeding schedule, whether she’s awake or not. Even if she shows feeding cues an hour-and-a-half before her scheduled feeding time, I can’t feed her. It’s the most hideous feeling in the world to not be able to feed your baby when she’s hungry. Mess with a mother’s natural instincts and see how long she plays nice. I finally got permission to nurse her between feedings, which she really has no interest in anyway. Breastfeeding frustrations? That’s an entirely new post for a different day.
Once feeding time finally rolls around, I cross my fingers and hope that Lila will take a bottle. She’s taking about half of her feedings by mouth — not good enough to go on an “ad lib” schedule. In other words, eat when she wants to eat. Because of Lila’s lung disease and prematurity, bottling is hard work. Once we get started, there’s no doubt about it, she wants that bottle. She gets a little too excited and might cough or gag at first. But then she usually gets everything coordinated and does pretty well. That is, if I’m allowed to continue bottling her. Some nurses — again, most are great — will stand watch over my shoulder and the first moment that Lila has a desat (her heart rate or oxygen level drops) they take the bottle from me and the bottling session’s done. She gets the rest of her feeding through her NG tube. I don’t like being watched like that. I’ve fed her enough times to know when to stop, what to do, etc. I know my daughter well enough to know that it takes her a bit to get into the feeding and when the nurses take away her bottle at the first little cough, they’re taking away her chance to prove she can bottle, thus prove she’s ready to come home. Besides, the nurses sit 10 feet away and I’ll holler if I need them. Some of them make me feel like I’m incompetent and that’s not a good feeling to have. There’s enough of that emotion floating around as a new mother anyway. I know there’s reasons for everything they do in the hospital. I really do know that. And Lila’s care has been exceptional. I’m just saying it’s a crummy way to have to take care of your baby.
Life is overwhelming right now. The time I spend at the hospital is more than a full-time job. I run home in between visits to take the dogs outside, do a load of laundry or a sink full of dishes. Don’t ask me the last time my floor was mopped. Boxes are stacked upon boxes in my dining room as we chip away at packing up all of our stuff. The pictures and decorations have been taken off the wall. Not exactly the homecoming environment I envisioned for my baby.
On one of Tyler’s days off last week I dragged him along with me to Babies ‘R Us for a major shopping trip. Half-way through the trip we both questioned, why exactly did he come? Combing the aisles for the perfect diaper bag and bottle nipples, lets just say it wasn’t really his thing. But then I realized I needed him for shopping cart reinforcement! I think we finally have most everything we need. And here’s the photographic proof that moving to a bigger house is an absolute necessity!
Finally, I’ll leave you all on a happier note with a sneak peak from our impromptu photo session tonight with Auntie Meg. Look at those eyes! I think she looks like her Daddy!!!
Day 49 November 2, 2010
A couple of our very good friends are throwing a benefit for us this Friday and we’d love to see you there. We cannot thank Amiee and Aron enough for going the distance to do this for us. There will be music, hugs and drinks for everyone starting at 9 p.m., Friday at the Hexagon Bar, 2600 27th Ave. S., Minneapolis. We’d love to see everyone come out so that we can thank you all for your support in person! More info on Facebook: http://www.facebook.com/home.php?#!/event.php?eid=157931814237486