better day

It was great to have help today. I feel much more at peace and at ease.

First week

Well, we survived the first week at home. Barely. The first part was okay but now the sleep deprivation is catching up with me. I am grouchy and clumsy. Claire is frustrated and acting out. The house is chaotic. Emily has not gained any weight during the past two days.
Mark went to work on Tues. but not today. I didn't feel that tired until going it alone on Tues. Today I spent the entire morning in bed and only woke up a few times to nurse Emily. Mark plans to work Thurs and Fri. I have a friend from church and a new baby sitter coming Thurs and a respite care person from the agency coming Fri. We are looking forward to my mom coming back to town on Sunday.

weight gain

Emily's weight gain has been slow since she got home. She was 2132 grams on Wednesday when she was released from the hospital. Today I weighed her and she is 2226. She has gained about 90 grams.

At her pediatrician visit on Friday she weighed 4 lbs 11.7 ounces and today she was 4 lbs 12.2 ounces. That is less than an ounce over several days. She should be gaining about half ounce per day. Please pray that she will steadily gain weight. The doctor suggested switching back and forth from one breast to the other several times during each feeding. I tried this today and didn't find it very successful...well at least it didn't seem effective at helping her take more. It just meant that I couldn't get her to latch back on to the other breast, so she finished the feeding sooner than she would've.

I'm pumping 3-4 times per 24 hours now.

Tidbits

I keep thinking of things I want to write about Claire then forgetting to do so.
She has taken to making predictions. This morning I told her she would go to church with daddy and talked about what she would do and who she would see. When I told her, "You'll see Khouria Joy." She said, "She's going to give you big hugs." It seems most of the predictions have to do with someone else giving her something of sharing something with her.

Claire likes to describe things...mostly animals and people. Her description of Emily include: "She has tiny hair, she has hands, she has eyes, she has a nose." Claire likes to touch each body part as she makes these observations. Very sweet. Occasionally she still thinks I'm at the hospital or about to leave to go there. She only woke up once during the night last night.

Emily nurses about every 2 hours round the clock. I haven't figured out how to nurse her lying down yet. Will work on this again at nap time tomorrow. She is nursing way better and way more than I expected for the first week at home. Thank you God!

Grateful

I am grateful to God for all the help we've had from Claire and Emily's grandparents over the past 4 months through my bed rest and Emily's 11 week NICU stay. Claire has had a very rich life being cared for by people who love her dearly. In spite of the difficulties Claire has thrived and developed beautifully. She is much more independent and more articulate. She has been happy and well behaved most of the time. She has enjoyed so many fun activities baking scones and muffins with her grandmas, tea parties and picnics outside, swinging on the new swing, playing with water in the back yard, helping with chores, going to the park, the museum and My Gym, not to mention her big girl adventure in Arizona. Many thanks to Mark's Dad who baled us out this last week and took care of Claire while I was with Emily in the hospital and helped us keep our kitchen clean and repaired and installed kitchen windows.

I am also grateful to God for Emily's health and development. I am grateful that she is nursing, and thankful that she is home. It is so different being with her all the time. I see her so differently. We are getting to know each other. She is very sweet and thankfully not very fussy so far.

Claire is having a bit of difficulty adjusting to me being occupied with Emily so much of the time. Since I'm here all the time now she wants my undivided attention a lot. I try to have some alone time with Claire each day and give her extra affection. She is interested in Emily and enjoys touching her baby sister and rubbing her cheek on Emily's soft hair. She exclaims about how tiny Emily is. Her sleep recently has been troubled but last night was much better. She slept till 5:10 am and then went back to sleep till 6:30

Firsts

Yesterday we gave Emily her first tub bath. She likes the water and kicking against the sides of the tub. I also trimmed her fingernails which were very sharp and pointy.

Today she had her first outing away from home. We took her to the pediatrician. It went well. He wants to see her every few days until she's over 5 lbs. We will go back on Monday.

Now it is Saturday. I started writing this yesterday and was interrupted. Mark, Claire, Vaughn, Andrew and Elsa are at the Natural History Museum this afternoon.

Right now Emily is having her first experience with Classical music. She is happily kicking and waving in a little seat.

Hard work

Mothering a newborn and toddler is hard work! Whew! I didn't sleep much last night as expected. I took a little nap this morning but I kept waking up when I'd hear Claire running through the house or having a meltdown. Mark enjoyed a nap with Emily lying on his chest yesterday afternoon.

I'm trying to figure out the scale. It is extremely sensitive to movement. I finally got a solid reading of 4 lbs 13.2oz. I think Emily is getting enough milk since she has lots of wet diapers. I haven't started logging feeds and diapers like we did for Claire, but I'd like to. Most of the time I don't feel stressed about it. Except during the night. I thought I might give her more bottles at first since that is what she was used to in the NICU and she was getting 27 calories/ounce. But I find bottle feeding to be frustrating. I am much more used to nursing her since I've been doing it daily whereas I only gave her one bottle in the NICU. (The nurses and speech therapist gave all her bottles.)

It's hard to find the time and energy to pump. I'm pumping now while Emily listens to the wave radio station. Claire is with her dad. They spent the last hour in the back yard and now she's going to eat then nap.

Homecoming

Got Emily home around 2:15 pm. Claire was overjoyed. We are all very happy and tired. Emily nursed well this afternoon and evening. I tried to give her a supplemental bottle just now and she only took half ounce. She is used to eating every three hours and her last feed was nearly 4 hours ago but she is not interested.
New photos on Flickr.

Today is the day!

Got a call at 10:30 that Emily will come home this afternoon!

sleep

I just woke up at 5 and Claire is still sleeping! Thank you God. It was so nice to have a long chunk of undisturbed sleep. I slept 6 hours. Hopefully after I pump I can catch a few more Z's.
I have a theory that she tends to sleep better or at least has a chance of sleeping better when her dad puts her to sleep. Last night I read stories and said prayers with her then Mark bounced her on the exercise ball and put her in bed.

later....
Claire slept till 5:30. That's 9.5 hours.

tidbits...
Whenever I put mitts or socks on Claire she tells me whether or not they match.
Lately Claire doesn't want me out of her sight. Very clingy. (Not that I'm surprised by this considering the circumstances.)
Claire wants to go lay in Emily's bed. A small co-sleeper next to our bed. She has been very insistent all morning, "Put Claire in Emily's bed."
right now she is serenading me with the guitar which is on a stand in our dining room right near where I'm pumping. she says, "That was a lot of music."

P.S. unlrelated: need to buy a plug-in thermostat

not today

The doctor wanted to observe Emily a while longer since she had that brady. ARGH! I'm sure it just happened because they gave her a double dose of sedative for the MRI then gave her an eye exam and injection.
Emily was happy and alert when I was there today. They did another echocardiogram aka heart ultrasound. The nurse said she thought the technician saw a small ASD as well as the VSD. We'll see what the cardiologist has to say tomorrow.
The MRI of the brain showed that all is normal.
Can't wait to bring her home!

The end is in sight

Emily's Doctor says she may be able to come home Tues afternoon.

Emily had a very trying day Monday. She had an MRI for which she had to be sedated. They had to give her two doses of the meds to get her to go to sleep. They had to put it an IV as back up. UGH! They didn't tell me this in advance. She also got an injection for immunizations. And she had an eye exam. After the eye exam she had a Brady. (The only one she's had in weeks.) The nurse said that this is fairly common after the eye exam and that they will want to keep her for 24 hours after this episode to make sure she is ok. Unfortunately I was not able to be with her to comfort her in teh midst of all this because I was Claire's sole companion till about 1pm when Mark's dad took over.

Claire is having a terrible night so far. I'm pumping right now after already getting up with her twice. The firs time it took over 30 mins to get her back to sleep and the second time I spent 45 mins ans still couldn't get her to stay asleep so I took her to Mark. I don't hear anything now, so I think she is asleep. May she sleep till morning.

Continued progress

Emily is taking all her milk by mouth now. I can feel the difference between how she nursed a couple of weeks ago and how she nurses now. Her suck is getting stronger. She doesn't always want to wake up and latch on though. She will sometimes nurse for 10 minutes and then conk out and refuse to latch on again for 15 mins or so. I can't wait till she is on an "ad lib" "on demand" feeding schedule. Then I won't feel so much pressure to get her to take a specified amount. We are renting a baby scale so we'll be able to weigh her regularly at home to make sure she is gaining.

They want to do an MRI of th head tomorrow because Emily was under 1000 grams at birth. It seems like a total waste to me. She had 3 cranial ultrasounds and none showed any abnormality. They insist that this is standard procedure for all babies born under 1000 grams since they frequently have brain bleeds.

They will also do another ultrasound of the heart tomorrow to verify that the VSD is closing.

I will ask about her homecoming date tomorrow.

Claire's chores

I keep thinking of writing a post about Claire's chores so here goes...
Claire loves to be involved in whatever the grown-ups are doing ans has taken on some chores.
She loves to rinse dishes and put them in the drainer as they are being washed by an adult.
She puts her dirty clothes in the laundry basket at the end of the day. She tries to empty the dryer lint from the lint catcher. She picks up her books and toys with encouragement. She helps set the table by taking the silverware and putting it on the corner of the table.

We are glad to have our sweet Claire back home. A huge thanks to Nanu and Papa for giving her a wonderful big girl adventure this week. She had a great time.

Emily continues to gain stamina for the feedings. She took all but 20cc of her feedings yesterday. She took two whole feeds from the breast using the supplemental nurser today.

Rejoicing

Thanks be to God Emily's VSD (ventricular septal defect) is getting smaller. She had a heart untrasound today and the cardiologist said the is smaller than it was. Pray with us that God will heal it completely so that she won't have to have surgery. (We are praying the same for Claire's ASD.)

Emily is getting closer to taking all feedings by mouth. She is getting quicker with the bottle feeds but has to work long and hard to get a full feed from the breast even with the supplementer.

More good news... the breast milk no longer has Staph bacteria in it so Emily is receiving more of my breast milk. They are tapering off the formula slowly to see if she can still gain weight with less calories. (She has been getting formula that is 27 calories per ounce and breast milk is approx. 20 calories per ounce. They mix in a fortifier which adds 2 calories per ounce.)

Emily also passed her hearing screening today.

P.S.
There are new photos on Flikr.

Due date

Today is Emily's Due Date. I told her happy birthday and took some photos. She is 4 lbs 4 oz or 1998 grams.

Emily seems to be getting fed up with the supplemental nurser. She took a full 38 cc this morning but at noon I couldn't get her to latch on at all. She was awake most of the time between 9 and noon so I guess she was just too tired. St 3 she latched on after some coaxing but refused to latch on again after burping until I switched to the breast without the tubes taped to it. Unfortunately I didn't realize that she latched on with her bottom lip curled in so she was sucking on her lip as well as the breast. I don't think she got much.

We're struggling with an ant infestation here at the home front.

It sure is a challenge keeping us fed and dishes and clothes washed and put away. We sure appreciate all the help we've received from our moms over the last few months.

more feeding

Yesterday Emily took about half fer feeding by mouth. Including one breastfeeding using the supplemental nurser in which she just about emptied it. She struggled at some points and seemed to get frustrated. I tried again in a different position without the tubes and she was a happy camper. Her weight gain is still not consistent. They sent another breast milk sample to the lab for testing. I should know the results by tomorrow. I think she may gain better on fortified breast milk.
I had a neck ache yesterday after holding Emily for a couple of hours. It's feeling better today. I did some stretching and Mark gave me a massage.

Claire is having a great time with her grandparents in AZ. One big challenge is her sleeping. She has been waking up in the wee hours and then not able to stay asleep for an hour or more after that. We miss her cheery voice around the house.

adventure

Claire, Nanu and Papa had a safe journey to Prescott. Claire talked non-stop until she conked out and slept for 90 mins from the car she enjoyed looking at the moon. This was her second nap of the day so she went to bed late. She woke up at 6 am asking to go feed the birds. She is very excited about her new surroundings.

Mark and I slept really well. It is so nice to feel well rested.

sunday news

Emily took a full feeding by bottle for the first time today. She is able to try bottle or breast at every feeding. If she doesn't finish the 38cc she is supposed to have the nurse puts the rest down the feeding tube. The goal is to get her to take all her feedings by mouth.

Claire is on a big girl adventure. She is staying with Nanu and Papa this week. We are all a little nervous as she has never been away from home without us. I am looking forward to spending a lot of time with Emily at the hospital this week.

mini-conference with NICU doctor

Emily has been in the NICU for 9 weeks now, which is longer than Claire's stay. We wanted to have the doctors explain her situation so we know what to expect instead of guessing based on prior assumptions. The two main factors are her heart, and her feeding skills.

Her heart defect is more severe than Claire's, so it is definitely slowing her growth. But the doctor said that as long as she does continue to grow, that is a good thing. If her growth stopped utterly, then they would have to consider doing the heart surgery now, which is more dangerous the smaller the baby.

Feeding is a combination of instinct and skill, and in a preemie they are lacking in both, so it requires practice and waiting until they "get" it. He said there is often a sudden breakthrough rather than gradual improvement. I think Emily has the skill/instinct already, but seems to get tired or stall out.

The night-shift doctor was very helpful in answering our questions. Coincidently, he was the same doctor that briefed us the night after Emily was born. I filled out a kudos postcard at the hospital in appreciation.

slow nursing

As I mentioned on Sunday Emily is not yet strong enough to get very much milk at the breast. Even with the nursing supplementer which delivers additional milk through a tube taped to the breast she is only getting about 5-10 ml from the supplementer in 20 minutes. Today the nurse on duty had lots of personal experience using the supplementer and gave me some tips about how to tape it and to use both tubes instead of one and to use the large diameter tubes for a faster flow. She got 10 ml in 7 minutes.

more progress

breastfeeding went well yesterday. Emily nursed 4 times (A new record). A Woman from La Leche League met me ay the hospital and saw how Emily was latching and sucking and thinks she is doing well and won't have problems nursing exclusively once she build up her strength and stamina.

Emily took the bottle at noon yesterday for the first time. She was able to take 20 of the 37 mls that she gets. (They gavaged the rest.) She didn't seem to have trouble with the suck swallow breathe pattern at the bottle. I feel less pressure now that she has a way to take feedings by mouth when I'm not there. For now she'll be receiving two bottles every 24hours.

Big Day for Claire

Claire rode her tricycle a few feet by herself. She can just reach the pedals now. Nana measured her today and she is 32.5 inches with shoes on. She did #2 in the big potty. She is getting very close to being able to jump off the ground. (This is something the physical therapist has been working on with her.) She can jump on the exercise ball. She also had a bath in the big tub instead of the inflatable toddler tub. This afternoon was hot and Nana told Claire that she didn't know what they should do that she didn't have any ideas. Shortly thereafter Claire said, "Claire has an idea. Claire bounce on the ball." Claire seems to be regressing in her sleeping. She has been waking up several times during the night the past few nights.

Emily has not been gaining well the past week. She has only gained about 5 grams per day and they like to see about 30 grams per day. They will do some further evaluation of her heart tomorrow. This will include a chest x-ray and an ultrasound. They are concerned that her heart problem may be contributing to her lack of weight gain. I just returned from visiting Emily this evening and she gained 45 grams since yesterday. She also didn't expend much energy nursing today. She spent very little time actually sucking. I guess she needed a break.

They decided not to transfuse her because her hemoglobin has increased a bit and she is not symptomatic.

It has been nice for me being in the nursery because I have had the opportunity to chat with the other moms. I have seen several babies come in for a few days and go home.

Emily seems to be stagnating in progress with breastfeeding. She nursed for just a few minutes each time today. She was wide awake this morning for a long while but even then didn't nurse as long as she had the previous couple of days. The doctor is encouraging me to think about letting Emily begin to take the bottle so that she can go home more quickly. She said that she is ready to go home except for the feeding and that babies develop better at home with their families. I am in the process of coming to terms with this. I still have a fear that Emily with reject the breast as Claire did. Please pray that Emily will be able to switch back and forth like most babies do.

Nursing

Emily and I got coaching from a speech therapist today at the 9am feeding. She said Emily has a good suck and is swallowing just fine. She also noticed that Emily was making a funny clicking sound as she nursed. She said it sound like Emily is retracting her tongue. She suggested letting her suck on my finger between feedings and gently push down on her tongue as she sucks. I tried this. Just before leaving this evening, I was talking about this with a new travel nurse who was in the nursery with us half the day today. She has been a parent educator in hospitals elsewhere. She said Emily is probably not latching on correctly but has her tongue up instead of down when she latches on. I think the same nurse will be with us tomorrow and am eager for help getting a correct latch on.

Emily's hemoglobin was up a little so they are holding off on the transfusion.

Emily nursed well 3 times today. 9am 3pm and 6pm. I decided to stay home and go to bed early this evening instead of trying for three feedings in a row.

I plan to contact some La Leche league people about the latching problem too.

Milestones

Emily has reached almost all her milestones. She is maintaining her temperature, she is over 1800 grams, she is on stable meds, she has no IV, she is breathing on her own.
She just needs to be able to eat by mouth and gain weight. I am so eager for her to learn to breastfeed and to be able to wake up and nurse 8 times a day. So far she can do 3 times a day but she isn't getting very much milk per nursing session.

All day at the hospital

I spent all day at the hospital with Emily today. Emily is slowly making progress with breastfeeding. She nursed for about 45mins at 9:00 this morning. At 12 noon she was too sleepy. At 3:00 I didn't burp her soon enough and she had a big spit up. but at nearly 4pm she nursed for a little while while she was getting formula through the tube. At 9pm the nurse had already awakened her and changed her before I got there and as soon as I picked her up she was ready to go back to sleep. I am annoyed about this. I did enjoy holding her skin to skin while she was tube fed. I also did Kangaroo Care from 2-3 in the afternoon.

Pray for her to overcome her current anemic state. Her hemoglobin levels have been low for a week or so. They are giving her iron supplements to try to help her overcome this but her bone marrow has to kick in and produce more red blood cells... or she'll need another transfusion.

Pray also for her to be able to gain 15-30 grams per day while nursing. Yesterday she gained 2 grams and today she gained 6 grams.

Claire and Nana and Daddy had a field trip to the museum. Mark says, "I really enjoyed spending the day with little B today. Every week she develops new skills. She walked up some stairs without crawling." Claire had a blast in the pretend archeological dig site in the discovery zone in the basement of the museum.

New room

When I arrived at 8:45 Emily was awake and fussing a bit. I changed her diaper and took her temperature. she seemed to like the attention and stopped fussing. Then I got her settled on my lap and the latched on right away and began sucking. She nursed well at the 9:00 am feeding. She is now 4 lbs even. She has doubled her birth weight. She is now in the nursery. This is an overflow room where they put NICU babies who are doing very well. There are only three babies in there and it is the home of the rocker/glider that I have been looking forward to using. It will be nice to out of the hubbub of the NICU. (Although yesterday in room C I had a very pleasant day. I knew all three nurses and they worked well together and were very helpful and friendly to me.)