38 gestational weeks

Happy 38 gestational weeks to Lily and Claire! It's hard to believe we're finally at the place where I would have delivered, had the girls not come so early. Lily is weighing in at 5 lbs 14 oz and Claire is 4 lbs 6 oz. It seems like everyday I notice them getting bigger now-- Lily is even wearing newborn clothes and graduated from preemie size a week ago. Claire, of course, is still wearing preemie and will for a while. Both girls have mastered pulling out their feeding tubes. Yesterday Lily actually pulled hers out, along with the tape that keeps it sticking to her face, and somehow got it out of her crib and to the floor next to her. The nurse and I laughed imagining this tiny baby pulling it out and throwing it all onto the floor. :) We're still working on them feeding by mouth, which is what is keeping them at the hospital. I'm told that they will just one day "get it" and take off. We're so excited for that day to finally come, because we can't wait to bring them home! The NICU has been a long journey that we are excited to put behind us...

My apologies for not updating any sooner. Things are hectic in our house as we're doing last minute projects to have the house ready for the girls. They are doing great- Lily is weighing in at 5 lbs 5 oz and Claire is 3 lbs 14 oz. Their growth in the past couple of weeks has been amazing. Claire is now in a crib (like Lily has been) and both girls are off all oxygen. It's so nice seeing them without nasal cannulas. They are still working on their feedings. As soon as they are able to take all feedings by mouth, then they get to come home. Depending on the day/how sleepy they are, usually determines how much they decide to take by mouth. The nurses say that this usually takes the longest and is the most frustrating. Probably because we're SO close to home, and waiting when something is within reach seems to take forever. We had a professional photographer come in to take photos of the girls. So far we've seen the sneak peak pics, and they are adorable. Zane also was able to hold Lily and Claire for the first time-- it was pretty special, even though I think he was a bit scared of hurting them. Here are the photos:

Day 40...something!

Lily and Claire are both doing great. The past week has given us some positive and exciting changes. Lily is now in a crib, and has been since May 31st. Since she graduated from her giraffe bed (incubator), it means she is now in baby clothes and is able to maintain her own temperature. Her next obstacle is to learn to bottle andd breast feed and get off the little oxygen needed. Claire is also doing great. She is in clothes also, and is able to maintain her temperature on her own. If not for her low weight, she'd Also be in a crib. Both girls are getting fed every three hours for 30 minutes. Lily weighs 4 lbs 5 oz and Claire weights 2 lbs 13 oz. Its been so fun to see such positive progress and be so much closer to bringing them home. We are still weeks away, but its within reach now!

Update on Lily

I put off posting for a few days, because it isn't as fun to update with news that isn't just that things are going great. Things with the girls are still going very well, but Lily's follow up ultrasound wasn't exactly what we expected. The nurse practitioner tried to explain things to us (as you can see from my post before) but didn't go into the detail that the neonatologist gave us. What we found out, is that the report from one radiologist was worded strange, so Dr. Zac spoke with the pediatric radiologist. They ended up meeting and going over Lily's ultrasound together too.

Lily's bleed is still there, but what was noted are cysts outside of the bleed. This is known as Periventricular Leukomalacia (PVL). The doctor was fairly sure he saw these cysts in the ventricle-- although hers are very small and very close to the brain bleed. The cysts are essentially small dead areas that had trauma, likely in the days/hours before she was born. It seems Claire wasn't the only one stressed in the womb like we originally thought. They decided that since the ultrasound wasn't very clear, they will do a follow up in a couple of weeks. This will give us a more definite answer regarding PVL. If that ultrasound is also fuzzy, then they may opt to do an MRI.

So, what do these cysts mean, if Lily has a definite diagnosis of PVL? It ranges depending on the severity of them. Right now, Lily's cysts are very small and there are not a lot of them. It is also unilateral, which is great. This is all in her favor, and we're hoping if the cysts are definitely there, that it doesn't change. The results will be one of three things. 1) The ultrasound was just a bad picture and after all, she doesn't have PVL because it wasn't outside of the bleed. This option isn't all that likely, but still a small possibility. 2) No change (Dr. Zac believes this is a pretty likely to happen). 3) The bleed is dissolving more and we see more cysts/dead areas. This is obviously the last scenario we want. These dead areas are in the white matter of the brain- an area which is linked to motor control. The dead areas could result in nervous system issues (from slight motor control problems that physical therapy can help correct, to cerebral palsy in more severe cases). There is also a chance, that if there is no change in her ultrasound, that we see no difference in Lily at all- and she grows just the same as a regular child. We won't know this until she begins to move more (usually ages 1 to 2 would give us a better idea). Thankfully, she IS a newborn and the brain is still developing... meaning, even though very small areas of the brain may be dead, she will be able to use other areas just the same.

Obviously all of this information was a lot to take in at first. No parent wants to hear that there could be a possibility of developmental issues, and that there is nothing we can do but wait. But, we have accepted that 'it is whatever it is' and that through all of this, God has a plan. No matter what happens, it won't change Lily and it certainly won't change how much we love her. We appreciate everyone's prayers and support and ask for continued prayers for the girls.

I posted a while back regarding Lily's head ultrasound at 1 week old that showed a grade 1 brain bleed. The doctors told us not to be worried about it, because grade 1 brain bleeds will clear up on their own. One neonatologist said that, "If you take 100 babies with a grade 1 brain bleed, and 100 babies without a bleed- in one year you'd never know which were born with one and which never had one." So, we tried not to worry about it, but its been in the back of our minds since we got her results back.

They did a repeat head ultrasound 3 weeks later (at one month old). Claire's results were again normal, with no bleed. Lily's ultrasound still showed the bleed with a cyst. We met with a nurse practitioner who told us that the cyst is in the white matter, and in a location that COULD cause some slight issues with her lower extremity movement. Because of the location, she wanted to start occupational/physical therapy so that her brain will use alternate routes around the cyst & hopefully it will be no problem at all in her future.
I spoke with a neonatologist who said he thought the bleed was beginning to dissolve, but the other neonatologist wanted to speak with the radiologist about his report because he was a bit confused about it. So, right now we're waiting to hear back from him. Either way they will repeat the ultrasound in 3 weeks. Please keep Lily in your prayers.

Here are some recent photos:

                                                                       May 20, 2012

                                                                           May 19, 2012

                                               Lily going onto low flow nasal cannula! May 19, 2012

                                                    Dad and Claire, bath time May 22, 2012

One Month Down!

Happy one month (tomorrow), Lily and Claire! My apologies for not updating lately. As promised, here is a photo of Lily taken recently. I love how alert she looks-- both girls are spending a bit more time awake nowdays. They are also both doing well, Claire's creatinine continues to drop and is now at 1.0. Right now the focus is to get her to continue gaining weight, because she's very small for her gestational age. Last night she was weighing in at 2 lbs 3 oz. Lily has been gaining pretty steady and is weighing 3 lbs 4 oz. If she continues to grow at this pace, she'll be able to wear clothes soon and fairly soon start to be weaned into a crib. This is a process, because first they have to make sure she can maintain her temp by dropping it .5 degrees at each nursing shift. Lily is also now on low flow nasal cannula like Claire has been. So far so good-- and hopefully they won't have to go back to high flow.

They both continue to see occupational therapy for their thumbs (which is likely due to lack of space in the womb) and speech therapy. Speech therapy is trying to get them ready for breast and bottle feeding, which will begin soon. Lots of exciting things in their future! :)

(5/17/12)

                                            Claire Sophia, 3 weeks old (31 gestational weeks)
                      I promise I'll post Lily photos soon, this is the only one I had on my cell phone!


The neonatologist told us today that Claire's sodium is now in the normal range. This is important, because its an indicator of kidney function (along with her creatinine). This is another big step in the right direction! As of yesterday, Claire hit 2 pounds even! Lily is weighing in at 2 lbs 12 oz. It's amazing how much bigger she looks in comparison to her sister. 12 ounces is a big deal when we're at the two pound mark! :) In Claire's photo, you can see the sling on her left hand. Occupational therapy decided to make one for Lily too, so now they have one more thing in common.

This week has been fairly uneventful in the NICU... and in the NICU uneventful is really good!