37 days old

37 days old/days in NICU

Weight: 3 lbs 9.4 oz ( +10 grams)*

*30 grams=1 ounce

Not too much change today. Ella is still the same amount of O2, so they are going to be giving her a dosage of Lasiks (the diuretic) everyday. The murmur is still coming and going, it hasn't been heard today but it was heard yesterday. I'm REALLY hoping that the diuretic will help with her O2 needs. I asked what happened if it doesn't, and the nurse just said she thought it would. Then I got on another topic and forgot to pursue it. 

On the bright side, the doctors and nurses see what a drastic difference Ella's O2 is at when we kangaroo with her and are really encouraging us to kangaroo with her. This week will be my first week staying every night, so that should be interesting. Luckily they have the Ronald McDonald house opened which is beyond amazing. It has a stocked pantry, a full, top of the line kitchen, a big screen TV that's at least twice the size of our TV...it's absolutely gorgeous. I'll actually be staying in Ella's room but the Ronald McDonald house is open from 9-9 for families and friends to use. 

She may not know she's a preemie, but her body does

36 days old/days in NICU

Weight: 3 lbs 9 oz ( +20 grams)*

*30 grams=1 ounce

Check out my new tab called "A Month of Thanks". Every day in the month of November, I'll have a new thing I'm thankful for in honor of Thanksgiving this month!

Today had a lot of ups and downs. The GOOD news is that today we got to start the breastfeeding  protocol today with Ella. The breastfeeding protocol is this: if she breastfeeds 0-5 minutes, she gets a full feeding through her tube, if she breastfeeds 5-10 minutes she gets a half feeding through her tube and if she breastfeeds 10+ minutes, she gets NO feeding through her tube! At 5:00 PM, she nursed for 14 minutes so she got her first FULL FEEDING from just breastfeeding! Very exciting! I can still only breastfeed 4 times a day and I'm guessing it'll stay that way until her O2 needs come down, but it's still really exciting. This is a HUGE HUGE milestone in the NICU. It's a step towards being able to start breastfeeding on demand! I spent all of Sunday at the NICU. We did some talking today and we're down to the final weeks. My due date is almost 5 weeks away, which means that Ella could be home in probably 3-5 weeks. So we decided that Monday-Friday, I would spend the night at the NICU to be with Ella and to work on breastfeeding. It was a really hard decision to make to be away from Olivia that much but I have two children who need me and right now, the greatest need is from Ella. The more I'm there, the more she gets to practice breastfeeding and the sooner she comes home. I'll still come home in the afternoons and spend that time with Olivia and Shane will be with her in the mornings. It's just the decision that made most sense and worked best with our family. A minor thing we realized is that it will actually save us a little bit in gas too, which will help a TON. We are spending a ghastly amount on gas going back and forth so much to the hospital so this will definitely help a little. 

I found out that the doctor can still hear Ella's heart murmur sometimes. The way the doctor described it is that there are two kinds of heart murmurs essentially. There is the one that Ella had, where the duct was opening and unoxygenated blood was able to make it to her lungs (which is what occurred ThatNight she got SO SICK). The other one, the doctor told me that because babies chests are so thin and their heart is right there, they can often hear a murmur that isn't a problem. I know, that was a terrible description but since I'm not a doctor, and I'm trying to describe it as basically as possible, I don't really know how else to describe it! HA! Just know that there's a "bad" one and a "not-so-bad" one. They don't know which one it is, which is what really freaks me out. Her doctor says that usually, if it's the "bad" one (which she had before), there will be other indications such as extra need for O2, blood pressure problems, her heart rate may drop or rise a lot...stuff that all happened before. Of course, we all know that Ella has had a need for extra O2 lately and she is currently on 1.5 liters of pressure. However, today, her need for O2 has been mostly in the 40's, as opposed to the high 50's-60's like it had been. The way they would find out for sure is to perform an echocardiogram, which is the test that they performed That Night she was so sick. That was what told them what they needed to know That Night and what saved her. Her doctor told me today that she doesn't appear to be sick and that an echocardiogram is something that costs thousands upon thousands of dollars to perform. He said that since she doesn't appear to be sick, they try not to perform the echocardiogram. However, if Ella starts showing any other symptoms or needs more O2 or gets worse in any way, they will perform it. 

They also did some labs today and discovered that everything is okay, except she appears to be more anemic. The doctor checked with the blood bank and they don't have anymore of the blood that Ella received in her first 3 transfusions. He is hesitant to introduce a new donor to her, even though the risks involved with transfusions are actually very low but also because if he gives her another blood transfusion, it will essentially stop her body from naturally continuing to produce more red blood cells on it's own from her bone marrow. He said that based on how her body is starting to produce it's own red blood cells, he thought that she'd be able to bring hermatocrit (the level of red blood cells in the blood) levels up on her own. 

So needless to say, after all of this, I kind of freaked out today. I relived That Night when Ella was so incredibly sick and I lost it while talking to the doctor. I started crying and at one point I told the nurse that I just couldn't deal with that happening again (of course I WOULD deal with it). I am so scared of her getting that sick again. The doctor reassured me that if it was the duct ("bad" murmur), Ella is much bigger and stronger then she was and shouldn't get that sick again. Plus, they are aware of what happened before and are keeping very close tabs on it. Of course, that doesn't stop the absolute terror that is clenching my heart. I want to tell them to do the echocardiogram and who gives a flying monkey about the cost (Which I actually half jokingly said to the doctor)! We have medical insurance for a reason right?! So, anyways, that's something we'll be keeping a close eye on. 

Our preemie doesn't know she's a preemie

Ella in the dress Great Grandma Carol made for her

Great Grandma Carol holding Ella for the first time <3

35 days old/days in NICU

Weight: 3 lbs 8.5 oz ( +1 oz)

That's what we keep getting told. So far, about 4 nurses in the ICC have told us that Ella doesn't know she's a preemie haha. She acts like a tiny full term baby with how awesome of a breast feeder she is, how awake she is and how aware she is. In all ways, Ella is doing fabulous except for her O2 needs. She went up to 1.5 liters of pressure on her cannula and is getting more doses of the diuretics. If this doesn't work, they may have to put her back onto the high flow cannula and possibly give her another dosage of the steroids. The good thing is though she was doing better this afternoon, with her O2 needs around 40%, compared to 60% yesterday so it DOES appear to have worked. Also, whenever Ella is being held, especially if we're doing kangaroo care with her, her O2 needs drop DRASTICALLY. Like, 10-20%. If anyone ever doubts the power of kangaroo care, you send them my way. Kangaroo care drops Ella's O2 needs AND it brought my milk in. 

In one of the outfits Meghan got for her

Last night I stayed the night and Ella did some really good breastfeeding. Then, this afternoon I was doing K-care with her and she started fussing and banging her face against my chest. I thought she wanted to be repositioned so I tried that and then I felt a little open mouth rooting around on my chest! I brought her to breast and BAM, 11 minutes of nursing!! It was awesome! She is doing SO well, I just can't believe it. 

Tomorrow I'm spending the entire day at the ICC to work on breastfeeding. The sooner she can take all her feedings by breast (and/or bottle) the sooner she comes home so we're being pretty aggressive about me being at the ICC these days. I'm staying 3 nights a week and am planning on spending one weekend day there (the entire day). I worry about Olivia and the effect it will have on her but so far it's been okay because she has Grandma (my mom) whom she absolutely adores. She's actually started telling me to go see Ella because she wants to see Grandma! haha I'm sure there were some other things I wanted to talk about but I'm dead tired after about 4.5 hours of sleep in the NICU last night. 

34 days

34 days old/days in NICU

Weight: 3 lbs 7.5 oz ( -0.5 oz)

Last night Ella got a diuretic and had a really good pee. I'd hoped it would help with her O2 needs but it didn't. She was still needing around 60% of oxygen needs, which is quite a bit. It's been slowly increasing. The doctor checked her blood gas, as well as a few other things and found that things were basically normal except her sodium and potassium were a bit low so they are going to give her supplements for that. I asked what could be causing this and they said it's probably leftover from when she was so sick and from her lung disease. Now, I didn't really know what they meant when they were talking about this "lung disease". First of all, I thought it was something that ALL preemies had and it went away. Second of all, I didn't realize that Ella still had this "lung disease". I came home and looked it up and was really surprised to learn a few things about it. It's not something that ALL preemies have and it can be long term, which they'd told me today when I asked. :( At the end of this post, I'm going to include some information I found that really simplifies it and makes it easy to understand, for those who are interested. I am more worried about this then I originally was. I didn't understand what it meant or how it's caused (check the end of the post). 

hehehe love this face

On the bright side, last night Ella breastfed at both her 8:00 PM feeding and her 11:00 PM feeding. Well, the second one was at 10:30 because she woke up in quite the hungry rage, rooting around looking for my breast. When I brought her to breast, she latched on IMMEDIATELY and started nursing with NO issues for 14 minutes!! That's a really long time without pulling away or stopping at all. I was super excited. I expressed to the nurse that I'd like to try nursing her throughout a day and keeping track of it (called the protocol at the hospital) to see how much she's getting while nursing and if we can wean any of her tube feedings. They were thinking we might be able to do that this weekend, but with her O2 needs going up and her being kind of hazy in the lungs, we're going to have to push that back. We can still breastfeed though. On the bright side, everytime we kangaroo, Ella's O2 needs drop down quite a bit...into the high 30's or 40's. Literally, as soon as she's laid against me, her breathing evens and she needs to be turned down right away. Tonight I'm rooming in so I'll probably spend most of the evening kangarooing with her. 

Chronic Lung Disease (Bronchopulmonary Dysplasia)

 

What is chronic lung disease?

Chronic lung disease (CLD) is a general term for long-term respiratory problems in premature babies. It is also known as bronchopulmonary dysplasia (BPD).

What causes chronic lung disease?

CLD results from lung injury to newborns who must use a mechanical ventilator and extra oxygen for breathing. The lungs of premature babies are fragile and are easily damaged. With injury, the tissues inside the lungs become inflamed and can break down causing scarring. This scarring can result in difficulty breathing and increased oxygen needs. Some of the causes of lung injury include the following:

• prematurity - the lungs, especially the air sacs, are not fully developed
• low amounts of surfactant (a substance in the lungs that helps keep the tiny air sacs open)
• oxygen use (high concentrations of oxygen can damage the cells of the lungs)
• mechanical ventilation - the pressure of air from breathing machines, suctioning of the airways, use of an endotracheal tube (ET tube - a tube placed in the trachea and connected to a breathing machine)

Who is affected by chronic lung disease?

Chronic lung disease can develop in premature babies who have had mechanical ventilation (breathing machine). Risk factors for developing CLD include:

• birth at less than 30 weeks gestation
• birth weight less than 1,000 (less than 2 pounds) to 1,500 grams (3 pounds 5 ounces)
• hyaline membrane disease - lung disease of prematurity due to lack of surfactant that does not show the usual improvement by the third or fourth day.
• pulmonary interstitial emphysema (PIE) - a problem in which air leaks out of the airways into the spaces between the small air sacs of the lungs.
• patent ductus arteriosus (PDA) - a connection between the blood vessels of the heart and lungs that does not close as it should after birth.
• premature Caucasian, male babies are at greater risk for developing BPD
• maternal womb infection (chorioamnionitis)
• a family history of asthma
• breathing problems at birth
• develop an infection during or shortly after birth

What are the symptoms of chronic lung disease?

The following are the most common symptoms of CLD. However, each baby may experience different symptoms of the condition. Symptoms may include:

• respiratory distress (rapid breathing, flaring of the nostrils, grunting, chest retractions)
• continued need for mechanical ventilation or oxygen after a premature baby reaches 36 weeks gestation

Symptoms of CLD may resemble other conditions or medical problems. Always consult your baby's physician for a diagnosis.

How is chronic lung disease diagnosed?

Because CLD is a chronic disease and appears gradually, physicians must look at several factors. It is often diagnosed when a premature baby with respiratory problems continues to need additional oxygen after reaching 28 days old. Chest x-rays compared with previous x-rays may show changes in the appearance of the lungs. The x-ray of lungs with CLD often have a bubbly, sponge-like appearance. X-rays are diagnostic tests which use invisible electromagnetic energy beams to produce images of internal tissues, bones, and organs onto film.

Blood tests (test used to determine if enough oxygen is in the blood) and an echocardiography (test that use sound waves to create images of the heart to rule out defects) are also used to confirm causes of bronchopulmonary dysplasia.

Treatment of chronic lung disease:

Specific treatment for CLD will be determined by your baby's physician based on:

• your baby's gestational age, overall health, and medical history
• extent of the disease
• your baby's tolerance for specific medications, procedures, or therapies
• expectations for the course of the disease
• your opinion or preference

Treatment of CLD may include:

• extra oxygen (to make up for the decreased breathing ability of the damaged lungs) and a pulse oximetry to measure how much oxygen is in the blood
• mechanical ventilation with gradual weaning as the baby's lungs grow and can do more of the work of breathing
• surfactant replacement
• medications such as:
  • bronchodilators (to help open the airways)
  • steroids (to help reduce inflammation)
  • diuretics (to help reduce excess fluid in the lungs)
  • antibiotics (to fight an infection)
• intravenous fluids and nutrition (to help the baby and the lungs grow). It is important to monitor the fluid intake, because excess fluids can build up in the lungs and worsen the infant's breathing ability.
• radiant warmers or incubators to keep the infant warm and decrease the risks of developing an infection
• nutrition (to help the baby and the lungs grow)
• immunization against lung infection by respiratory syncytial virus (RSV) and influenza

CLD can be a long-term condition. Some babies with CLD require mechanical ventilators for several months. Some babies will continue to require oxygen when they go home from the hospital, but most can be weaned from oxygen by the end of their first year. Babies with CLD may be at increased risk for respiratory infection and may have to be re-hospitalized.

33 days

33 days old/days in NICU

Weight: 3 lbs 8 oz ( +1 oz)

Last night I roomed in with Ella. We had a really good nursing session at 7:15 and she nursed on both sides (she didn't empty them of course) and let out a burp that one may not expect from a 3 pound baby! ha ha The next three nursing sessions after that though, she didn't nurse at all. The nurses and LC told me this is SUPER common with babies around this gestational age and it's actually really amazing that she's even nursing at all. It's still hard though when she sleeps instead of nurses or when she just lays there and plays with the nipple (thus causing a let down..GAH!) but doesn't nurse. I just have to keep reminding myself that she's only 34 weeks (today!) gestation and that most babies wouldn't even be latching on much less nursing at 33 weeks (which is when she started). 

Since Ella came over to the ICC, her O2 needs have increased from the 30% range to the 40-50% or sometimes a bit higher. Last night they did a chest X-ray and the doctor said she has some haziness in her lungs. Of course, this completely freaked me out because it made me relive the whole pneumonia experience again. I asked him if it could be that again and he said no, it looked like it was just some fluid and they would give her a few days of diuretics which should help. I was so relieved it didn't appear to be an actual illness that I totally forgot to ask what could be causing the fluid, so I'll have to try and remember tonight to ask the nurse when I get there. I would assume it's from laying flat all the time and not moving around but that's not based on anything other then what appears to make sense in my own head...which, of course, may not be the case at all!! 

I was thinking the other day about all of the things I don't want to forget about Ella and I thought how neat it would be to start a Memory Box for her (and one for Olivia too, even if it is a bit late in the game). I'm no good with the baby books (although I did make a scrapbook for Olivia's first year) so this would be our thing for them, especially as they got older. Then I thought it would be REALLY neat to have other people contribute to it as well! What I'm thinking is I'll get a pretty box from Michaels or something and have index cards that people can write memories on. It doesn't even have to be something major, just whatever they want to remember or they want Ella (and Olivia, for her box) to know about as they grow up. 

32 days

Try to burp Ella after breastfeeding. Turn on your volume. 

32 days old/days in NICU

Weight: 3 lbs 7 oz ( +1 oz)

I don't have too many changes to report but I thought I'd blog just to do a quick update and I have some cute pictures to show, of course. Ella is gaining about 20 grams a day, so almost an ounce a day which is right on track with what she should gain. Today, her feedings went from 28 ml every 2 hours to 30 ml every 2 hours, which is an ounce every 2 hours. As she gains weight, her feedings will increase. As her feedings increase, her weight will go up. As her weight goes up, her ability to keep herself warm will happen. Two key steps in coming home!!! She's also breastfeeding VERY well. It's rare for babies to breastfeed before 34 weeks. I am able to try and breastfeed up to 4 times a day and so far, she's nursed somewhere around 50% of the time I've brought her to breast I'm guessing. Sometimes she sleeps, a few other times she likes to latch, suck suck then stop and look at the curtains in her hospital room. She does this JUST enough to cause a let down then she'll let that drip into her mouth and then go back to looking around. I've decided she does this on purpose just to make life slightly more difficult for me :-D. I make stubborn babies!!!

The ICC is pretty fabulous because we can pretty much hold her as much as we want, as long as she's tolerating it well and still gaining weight. I can take her out and put her in her bed, which is fun because I'm leaning more how she prefers to be positioned. I've gotten much more comfortable with holding her and moving her around. She's really her own little person and she knows what she wants, when she wants it. All the nurses notice and comment on it. She's like a mini Olivia. Oh boy!!

Today Olivia woke up with a cold!! BOO! Shane is sick too. I'm super worried about getting sick so I'm wearing a face mask at home and we are also doing a vitamin regime that my friend suggested which will help now and also help boost our immune systems to help us fight things off. We'll continue doing that to help protect ourselves (which protects Ella), especially through RSV season.

Sisters, Halloween and ICC

Olivia and Ella meeting 10/31/2010

30 days old/days in NICU

Weight: 3 lbs 6 oz ( +1 oz)

I didn't have time to write yesterday. It was such a busy, busy day with Olivia coming to the hospital and then trick or treating, AND Ella moved to the ICC. Wow, so much happened, I don't even know where to start. Let's go chronologically. 

In the morning we went and I breastfed Ella again, very successfully. She's a breastfeeding champion! Hurray! Then I called Shane and he brought Olivia up to see Ella. She was adorable in her Little Red Riding Hood costume and won over all the nurses with how adorable she was! She came in and instantly knew that mama was holding Ella. She was very well behaved and came up and sat on my lap. We didn't even have to tell her how to be around Ella, it seemed that it was very instinctual. She was very gentle and touched her very softly. A few times she took Ella's hat off, but I think that was a combination of wanting to see Ella's head and also the fact that Olivia has a hat just like Ella's so she was probably wondering why Ella was wearing her hat. It was really wonderful and I was SO glad they were able to meet! Here are some more pictures from the meeting. 

First time she actually saw Ella

First family picture

Big Sister!

Ella is now on feedings every 3 hours and getting 28 ml each feeding. That's just under an ounce every 3 hours. She also gets to breastfeed (or try to) 2x a day. Hopefully that will go up soon!! 

Yesterday, Ella moved into the ICC!! I don't have any pictures because I forgot the camera both times we've gone there since she's been moved. The ICC is at Children's so we were really happy to be able to stay at Children's. Dr. Bendel-Stenzel (aka Gods right hand) called us yesterday and said a bed had opened up and she'd be moving over there. Hurry!! Very exciting. A little nerve wracking because we don't know anything about the ICC or the nurses but I'm sure it will be great! Just one step closer to her going home. 

Getting ready! 

Getting ready to go for our first trick or treating! 

Trick or treating with Daddy

We got our loot! 

 We brought Olivia trick or treating to a few houses yesterday. I was able to fit her coat under her costume so we were able to see her whole costume, which was neat. We only did about a block, maybe 6 or 7 houses but she had fun.